SpoonieLife
We often talk about how emotions trigger pain responses in those of us that have fibromyalgia.
I'd like to share my experience with you as a continuation from my post "I don't want to ruin my memories".
Since my amazing night out I have struggled with fatigue so bad that being awake a couple of is the most my body has allowed me.
The thing is when I say fatigue I don't just mean I'm a little tired, a little sleepy. For me it means arms, legs and torso like lead weights. I'm going t ue @bydls Spoon Theory to explain my energy.
With the kind of fatigue I'v been experiencing say I awake with all of 5 spoons, it takes 2 spoons to get off the bed, pee, wash n put clean pyjamas on.
Then I take my meds which takes 5 spoons off me so I'm already running at -2 spoons and as you can see I havn't done much. As the high from my meds wears off (which takes about 1.5hrs) I gain 2 spoons back.
This is the cycle I am stuck in, making it worse was going to work when I was already running low on spoons leaving me in he minus spoons category pretty quickly.
So other than my couple of hours at work this week which left me emotionally and physically depleted I have not ventured outside of my house, my bedroom that I usually think of as my sanctuary soon started to feel like my prison.
My bed no longer looked like my supportive, comfortable place to sit, but a hole that wanted to swallow me and spit me back out feeling worse than when it sucked me in.
I had expected to be fully recovered Tuesday at the latest but I did'nt just getting a bath took every ounce of energy I had. I felt totally wasted, washed out, exhausted.
Through all the fatigue my pain had'nt been to bad, just small niggles in my lower back and knees, which was probably a mixture of dancing then being laid up for a week in bed.
That was until today as the annoyance and pissed off ness of still being trapped in the house started to kick in, the reality that I only have enough energy to wash and dress myself, my whole body feeling like someone put a tube up my asse n filled my insides with concrete.
I begin to roll my thoughts backwards should I of gone out, was I mad to do it. Why do this to myself I knew the fibro & dercums where gona make me pay, but this much and so severly ?!? No I didnt' bargain on this.
My anger peaks as I realise how much the fibro and dercums want to take from me and its way more than I was willing to give. Its been 3yrs since I last #partied 3 whole years, and I gt pissed that time to and I was fine by the Tuesday maybe a bit groggy but functioning.
So obviously I'm realising that I'm a damned sight worse than I was 3yrs ago. The dercums and osteoarthritis are degenerative. This realisation though only added to the mood I was in.
When I'm upset, moody, down I have a habit of withdrawing into myself. I am quiet, sullen while my head trys hard to pull apart the negativity going on in it.
Those feelings though start to translate into pyshical pain, at first my knee's start to ache, then I notice my costochondritis (chest muscle pain) kick off with sharp stabbing pains, next the lipomas in my left arm from the dercums start to burn and itch n all I want to do is rip my arm to bits but that causes them to throb, making my arm ache from my elbow to my shoulder. For the icing on the cake the muscle in the left side of my neck is going into spasms lasting upto 30 seconds at a time.
I feel like I'm punished for having a bad day or negative feelings - I'm not sure how to put it into words. All I know is when I have any feelings around anger, hurt, humiliation, anything like that it results in pyshical pain. So then I get more pissed off which causes more pain.
It's impossible to live #happy permanently, it also does not help that due to the fibromyalgia I already have low seratonin levels. Knowing when t clamber off the emotional roller coaster is what's important.
This is where I can genuinely say being a trained counsellor gets me by. I am emotionally aware and once I recognise I am on a downward spiral I can and do counsel myself out of them. I will also seek support from my peers and friends (my twitter lovlies).
Sometimes I think to be pain free a third of the time I'd have to be numbed totally, my emotions totally turned off. I would need to be voided of a realy important part of who I am as a person. I am accepting of pain or pain but not when I'm already down, it's like pouring salt on an open wound.
I apologise if some of this post seems fractured or that I'v rambled but I had to do it, I needed to rant about how frikken unfair my illnesses are in there harsh treatment of me for going out for the first time n 3yrs then punishing m again for having negative feelings.
Xx Georgie
Saturday, 29 September 2012
Feeling Alone & Misunderstood ?
#PplsSpoonieBlog
An introduction & explanation of Fibromyalgia sourced from NHS Choices.
Fibromyalgia (A New You): Pacing with Fibromyalgia and Chronic Fatigue Syndr...
Fibromyalgia (A New You): Pacing with Fibromyalgia and Chronic Fatigue Syndr...: When living with fibromyalgia and chronic fatigue syndrome, pacing is key to managing your symptoms. That's easier said than done with the b...
SpoonieLife
#Apply / #Appeals #ESA / #DLA #PrintOffYourSymptomsIndividually n post.
Struggling with ur applications and appeals - print off all ur individual symptoms, use the tender spot diagrams to highlight ur own pain AND send in with all ur paperwork. #MakeThemUnderstand without a shadow of a doubt how ur ilness affects you as so far they are tarring us all with the same brush.
SpoonieLife
#Apply / #Appeals #ESA / #DLA #PrintOffYourSymptomsIndividually n post.
Struggling with ur applications and appeals - print off all ur individual symptoms, use the tender spot diagrams to highlight ur own pain AND send in with all ur paperwork. #MakeThemUnderstand without a shadow of a doubt how ur ilness affects you as so far they are tarring us all with the same brush.
Friday, 28 September 2012
I Don't Want To Ruin My Memories
SpoonieLife
I don't want to ruin my memories !
On the 22nd September I went to Blackpool to celebrate my little sister's 22nd birthday - I'd bargained on feeling woeful and that I'd need plenty rest after the fact.
The week leading up to 22nd I'd rested and looked after myself, eaten properly, gone to bed early pulled out every stop I could to ensure I wasn't ill on the night.
With great pride and joy I managed it, I was well enough to go to Blackpool with the girls. I felt better knowing that we where all staying overnight and that our hotel was 5mins away from where we would all be partying.
We where all wearing fancy dress so I'd incorporated knee high flat boots into my outfit and felt confident I'd be able to cope. My little sister wanted us to all meet at her friends no later than 11am.
We arrived n the drinking started - I just had 2 mojitos watered down with lemonade - our bus arrived at 1pm to get us underway. We arrived at our destination before 2pm and started to get ready - we had an awesome giggle 6 girls all getting ready to hit the town in fancy dress.
I straggled as much as I could as the thought of hitting pubs at 4pm filled me with dread, although even with straggling I was ready by 5pm and so we hit the pubs of Blackpool.
Most of the pubs where empty at that hour so the 6 of us reigned supreme taking to the dance floors and having a whale of a time. Slowly as the night progressed more n more people where out on the town.
We bumped into a group of lads my sister and her friends knew from home and they tagged along with us making the evening even more funny. around 11pm I was getting slight niggles in my lower back and knees - as I'd not been drinking I was able again to take my full dosage of pain meds.
But even with all the precautions by me at half past midnight I made the descision to leave the girls to party and head back to the hotel - 3 of the girls went back with me as they'd had enough alcohol for a week.
Less than half n hour later my kid sis rocked up at the hotel with the other girl still standing n 3 of the lads we had ll met - they'd missed their last train home and where stranded (that's their story) !
Out of the 4 that went back to the hotel first I was the only one still awake chilling with a cup of coffee - I joined my sis, her mate n the 3 lads in my sister's bedroom - we all stayed up talking and laughing till gone 4am then I totally threw in the towel and went to bed.
I was awoken at 9.30am with a cuppa tea by my daughter (she was one o the 6) - struggling to move I took all my pills and managed to go for a short, slow walk using my girls arm as a guide to go to the arcades. To my delight there was a McDonalds opposite where I spent most of my time ordering coffee.
We arrived home at roughly 1pm where I went straight to bed and hit the sack where I slept until 7pm.
Thinking it would only take me a few days to catch up on my sleep I went back to bed just before midnight on the Sunday and fell asleep before my head hit the pillow.
Monday came I awoke feeling okish - although the effect of my morning drugs soon made me feel awful - my head went west so quickly. I arrived at work for 12.30 dinner and was informed my clients had cancelled. On the journey home in the car I struggled to keep my eye's open.
I clambered into bed for a 'nap' and was awoken at midnight by my hubby with a drink and all my meds as he knows only to well what happens if I miss to many doses - withdrawal which is an ugly place to be.
I dropped straight back off to sleep and slept through till 2pm on the Tuesday. I spent the majority of Tuesday laid up on my bed resting only coming down to watch TV with my hubby around 8pm. I returned to bed and sleep around midnight but tonight sleep would come in fractured segments due to the amount of sleep I'd already had.
I woke Wednesday morning at 7am wide awake so got myself ready for my kid sis and her daughter coming to visit. Although we did nothing else but talk when they left I realised how exhausted I felt, I tried to fight it but lost.
Awoken by my daughter at 6pm I made the descision that I would go to the gym as I was now sore and stiff. I didn't work out hard at all I just made sure that I stretched out all the knots in my muscles. The gym session woke me up a bit and feeling more comfortable and alert than I'd been all week I went home feeling good, so much so that I thought the Yak fatigue I'd been feeling would pass.
I didn't fall asleep after I came home which was good. I hit the sack at midnight and awoke at 9.30am feeling quiet refreshed. I got to work at 12.30 finishing at 3.30. Much to my disappointment I was again flagging in the car and struggling to keep my eyes open. I went to bed as soon as we got home.
Awoken at 8pm by my hubby for my meds I came downstairs to spend some time with him. Within a couple of hours AGAIN my head was falling while I struggled to keep my eyes open. We went to bed at 11.30pm - where much to my aggravation I couldn't settle, the last time I saw the clock it said 02.40am !
I remember waking at 07.30am busting for the toilet, I laid back on the bed feeling awake enough but decided to try and get another couple of hours as its Friday I had no work and wasn't expecting any visitors. It musn't of taken more than 15mins before I was asleep again.
I was woken with a start by my hubby who said "it's 6pm you need to try and get up" I really thought he was winding me up. But soon realised he wasn't and that's when I started to get the hump.
Yet again I'v lost another day to sleep to the fucked up world of fatigue. I find this part of having fibromyalgia and dercums disease the most depressing. Pain I can deal with most of the time, sore tight muscles can be stretched out with exercise. Fatigue though isn't as simple as 'having a good sleep' !
I'v had loads of sleep yet still my body demands more. It's not even like I get a choice because I don't. My eyes start to close and when that happens no matter what I do I can't stop myself from nodding off.
I keep looking at the photos of me having a wonderful time to remind myself it was worth it, but now in my 6th day of recovery I am beginning to ask myself was it truly worth it ?
I don't want my happy memories to be ruined by my illnesses and recovery time, but even with my immaculate planning am finding 6days way to long and as I sit here typing this I cannot claim to be fully recovered. Of course I'm hoping that the king Kong sleep I have just endured will finally put an end to the fatigue I'v been plagued by.
I knew by Monday I'l never do a night out again in that way, it took more from me than I am willing to give and still keeps taking. When I realised I won't ever be doing this again it didn't upset me cus I thought I'v done it, enjoyed it, had a blast and nothing can ruin that for me not when I have amazing pictures to look at.
What I'd not bargained on was the length of time to recover, fatigue and sleeping away my life are the major causes of depression in my spoonie existence and slowly the smile I had face is being replaced with tears and frustration at the punishment being dished out to me for doing something that people take for granted.
I'v been reminded that it truly DOES control my life and no matter how much planning I do Fibromyalgia ad Dercums Disease have there own rules of life and went I push the boundaries I will pay a heavy price.
Looking forwards to this particular fatigue flare to end and keeping everything I have crossed that the flipside isn't insomnia !
Xx G
I don't want to ruin my memories !
On the 22nd September I went to Blackpool to celebrate my little sister's 22nd birthday - I'd bargained on feeling woeful and that I'd need plenty rest after the fact.
The week leading up to 22nd I'd rested and looked after myself, eaten properly, gone to bed early pulled out every stop I could to ensure I wasn't ill on the night.
With great pride and joy I managed it, I was well enough to go to Blackpool with the girls. I felt better knowing that we where all staying overnight and that our hotel was 5mins away from where we would all be partying.
We where all wearing fancy dress so I'd incorporated knee high flat boots into my outfit and felt confident I'd be able to cope. My little sister wanted us to all meet at her friends no later than 11am.
We arrived n the drinking started - I just had 2 mojitos watered down with lemonade - our bus arrived at 1pm to get us underway. We arrived at our destination before 2pm and started to get ready - we had an awesome giggle 6 girls all getting ready to hit the town in fancy dress.
I straggled as much as I could as the thought of hitting pubs at 4pm filled me with dread, although even with straggling I was ready by 5pm and so we hit the pubs of Blackpool.
Most of the pubs where empty at that hour so the 6 of us reigned supreme taking to the dance floors and having a whale of a time. Slowly as the night progressed more n more people where out on the town.
We bumped into a group of lads my sister and her friends knew from home and they tagged along with us making the evening even more funny. around 11pm I was getting slight niggles in my lower back and knees - as I'd not been drinking I was able again to take my full dosage of pain meds.
But even with all the precautions by me at half past midnight I made the descision to leave the girls to party and head back to the hotel - 3 of the girls went back with me as they'd had enough alcohol for a week.
Less than half n hour later my kid sis rocked up at the hotel with the other girl still standing n 3 of the lads we had ll met - they'd missed their last train home and where stranded (that's their story) !
Out of the 4 that went back to the hotel first I was the only one still awake chilling with a cup of coffee - I joined my sis, her mate n the 3 lads in my sister's bedroom - we all stayed up talking and laughing till gone 4am then I totally threw in the towel and went to bed.
I was awoken at 9.30am with a cuppa tea by my daughter (she was one o the 6) - struggling to move I took all my pills and managed to go for a short, slow walk using my girls arm as a guide to go to the arcades. To my delight there was a McDonalds opposite where I spent most of my time ordering coffee.
We arrived home at roughly 1pm where I went straight to bed and hit the sack where I slept until 7pm.
Thinking it would only take me a few days to catch up on my sleep I went back to bed just before midnight on the Sunday and fell asleep before my head hit the pillow.
Monday came I awoke feeling okish - although the effect of my morning drugs soon made me feel awful - my head went west so quickly. I arrived at work for 12.30 dinner and was informed my clients had cancelled. On the journey home in the car I struggled to keep my eye's open.
I clambered into bed for a 'nap' and was awoken at midnight by my hubby with a drink and all my meds as he knows only to well what happens if I miss to many doses - withdrawal which is an ugly place to be.
I dropped straight back off to sleep and slept through till 2pm on the Tuesday. I spent the majority of Tuesday laid up on my bed resting only coming down to watch TV with my hubby around 8pm. I returned to bed and sleep around midnight but tonight sleep would come in fractured segments due to the amount of sleep I'd already had.
I woke Wednesday morning at 7am wide awake so got myself ready for my kid sis and her daughter coming to visit. Although we did nothing else but talk when they left I realised how exhausted I felt, I tried to fight it but lost.
Awoken by my daughter at 6pm I made the descision that I would go to the gym as I was now sore and stiff. I didn't work out hard at all I just made sure that I stretched out all the knots in my muscles. The gym session woke me up a bit and feeling more comfortable and alert than I'd been all week I went home feeling good, so much so that I thought the Yak fatigue I'd been feeling would pass.
I didn't fall asleep after I came home which was good. I hit the sack at midnight and awoke at 9.30am feeling quiet refreshed. I got to work at 12.30 finishing at 3.30. Much to my disappointment I was again flagging in the car and struggling to keep my eyes open. I went to bed as soon as we got home.
Awoken at 8pm by my hubby for my meds I came downstairs to spend some time with him. Within a couple of hours AGAIN my head was falling while I struggled to keep my eyes open. We went to bed at 11.30pm - where much to my aggravation I couldn't settle, the last time I saw the clock it said 02.40am !
I remember waking at 07.30am busting for the toilet, I laid back on the bed feeling awake enough but decided to try and get another couple of hours as its Friday I had no work and wasn't expecting any visitors. It musn't of taken more than 15mins before I was asleep again.
I was woken with a start by my hubby who said "it's 6pm you need to try and get up" I really thought he was winding me up. But soon realised he wasn't and that's when I started to get the hump.
Yet again I'v lost another day to sleep to the fucked up world of fatigue. I find this part of having fibromyalgia and dercums disease the most depressing. Pain I can deal with most of the time, sore tight muscles can be stretched out with exercise. Fatigue though isn't as simple as 'having a good sleep' !
I'v had loads of sleep yet still my body demands more. It's not even like I get a choice because I don't. My eyes start to close and when that happens no matter what I do I can't stop myself from nodding off.
I keep looking at the photos of me having a wonderful time to remind myself it was worth it, but now in my 6th day of recovery I am beginning to ask myself was it truly worth it ?
I don't want my happy memories to be ruined by my illnesses and recovery time, but even with my immaculate planning am finding 6days way to long and as I sit here typing this I cannot claim to be fully recovered. Of course I'm hoping that the king Kong sleep I have just endured will finally put an end to the fatigue I'v been plagued by.
I knew by Monday I'l never do a night out again in that way, it took more from me than I am willing to give and still keeps taking. When I realised I won't ever be doing this again it didn't upset me cus I thought I'v done it, enjoyed it, had a blast and nothing can ruin that for me not when I have amazing pictures to look at.
What I'd not bargained on was the length of time to recover, fatigue and sleeping away my life are the major causes of depression in my spoonie existence and slowly the smile I had face is being replaced with tears and frustration at the punishment being dished out to me for doing something that people take for granted.
I'v been reminded that it truly DOES control my life and no matter how much planning I do Fibromyalgia ad Dercums Disease have there own rules of life and went I push the boundaries I will pay a heavy price.
Looking forwards to this particular fatigue flare to end and keeping everything I have crossed that the flipside isn't insomnia !
Xx G
Tuesday, 18 September 2012
My Experience With Doctor's
SpoonieLife
Doctor's.
IV had some awful & some brilliant experiences with Gp's - I want to share some of these experiences with you & debate some of the issues raised in the news today about complaints about Gp's rising in the last year.
I moved to the place I live now 13yrs ago & registered with the local GP. I wasn't ill at this point so all was well & I found the GP was ok - although rarely saw him.
I became pregnant & had a horrific pregnancy leading to my youngest Ethan being born 2mths prem by emergency c-section (which is beleived to have accelerated my fibro).
Slowly I began to feel more & more ill, I had pain so bad in my right hand it felt crushed, the fatigue was keeping me bed bound for days. I had chronic IBS and to top it off was suffering from depression.
Again & again I went back to the GP again & again he didn't seem interested in what I was telling him. On one particular visit he lost his temper with me & shouted at me that I was causing my own *emotionally induced pain* it was in my head & that if I stopped being upset all the time -'d feel better.
My initial reaction as I'd been poorly for 2yrs by this time was to jump across his desk & smash his face in but I didn't I left in tears like nearly every other visit had ended.
I was in my 1st of my counselling diploma at the time & shared with my peers what had happened, I talked things through with my peers & decided it would be appropriate for me to tell the GP I was not happy with the way he had treated me, also how it had made me feel.
Feeling emotionally supported by my peers I went to see the GP again, this time though I took my husband with me as I didn't feel strong enough to go alone. I sat in front of the Gp's HUGE desk shaking & breathing off the hot prickly tears trying to escape down my face.
With my voice shaking I mustered the courage to say " I am angry at the way you spoke to me at my last appointment " what looked like rage to me spread across the Gp's face, he then roared at me " you have NO right to be angry with me " to which I retorted " are you saying I'm not allowed to have feelings " his response was to tell me "I no longer wish to be your GP I want you to leave now ".
A few days later I received a letter saying that I, my husband & 3 children had all been struck off ! I was more angry than I'd ever been.
I signed on with a new GP in the same building but with a different practice. My new GP was lovely he listened to me & importantly didn't tell me my pain was in my head, although he didn't know what was wrong so sent me to see a rhuematologist.
The rhuematologist did blood tests for arthritis, all my results came back negative. He told me it was most definately arthritis & sent me for physiotherapy. The pain caused by the physio was excruciating.
One day my mom called to tell me she'd been diagnosed with something called Fibromyalgia & would I like to see a consultant that specialised in the illness. At breaking point I agreed.
My parents paid for me to have a private appointment, I took with me AA book filled with symptoms, time I'd been ill for, everything I could think of. He asked me to go for a walk while he read it all.
When I walked back into the room he said " from reading this I am nearly 100% sure you have fibromyalgia, there is one test I need to do " that's when he tried pressing the fibromyalgia tender spots to which I had 17 out of the 20.
Almost immediately I felt releif ( I was unaware of the fight I was about to get into to get correct treatment) although left his offices with sleepong tablets to which he had said " you can take these for the rest of your life or until there is a cure for fibro, as your body will grow accustomed to them & eventually they won't make you sleep but will help with other symptoms ".
My GP was brilliant with me when I told him about my fibromyalgia diagnoses (I also immediately quit seeing the arthritis doc n stopped pysio) my GP sent me to a different pysio who was way more gentle with me meaning it didn't hurt as much doing the exercise.
BUT that was the beginning & end of my treatment for about a year, until that is all of a sudden the pain began to spread throughout my whole body. GP put me on amytriptylene for the pain. Unbeknown to me at that time me & amytriptylene do NOT mix well.
Unaware of other drugs available, my rights or anything else for that matter I bumbled along for another 2yrs until again a bad flare had led to a severe depression leading to me nearly having a breakdown.
I had joined Twitter in 200c but didn't really get it, being bed bound & feeling like I'd lost my mind my mobile phone became my only connection to other people so in early 2011 I began tweeting. I soon became aware of people called #Spoonies.
Spoonies being a person with a chronic invisable illness - the term had been coined from a writing by @bydls called 'The Spoon Theory' (this can be found on another page of this blog). I began to connect with these people & soon found the support I had wanted so much.
I learnt much about other drug treatments, the names of all the individual symptoms that made up fibromyalgia & with this new found knowledge I approached my GP. At first I asked for venlafaxine which he gave me, although the chronic pain persisted.
Slowly over time I asked for new drug treatments by name :) I am now on
Dihydracodeine 90mg slow release 3x a day
Gabapentin 600mg 3x a day
Venlafaxine 37.5mg 2x a day
.
Naproxin 500mg 2x a day
Zolpidem 10mg 1x a day
Levothyroxine 100Mc 1x a day
I also take vitamins B12 & rosehip with consent of my GP as although we think vitamins are good for us they can cause adverse affects if mixed with long term medication.
Ie: if taking Levothyroxine you shouldn't take sea kelp.
What I have learned is that even with a good GP I have to take the lead & tell him what I need. Learning the names of the serperate symptoms really helped to (I have a blog:
call it by its name).
I do look back at times & wish I'd made a complaint about the GP who struck me off as I have since learned he is like that with most of his patients ! He likes to be #right he doctor you stupid ignorant patient ! Although I had the strength to tell him how I felt at the time, I was to vulnerable to take it any further & also very much unaware of my rights as a patiemt.
So they say now complaints are rising because people find it easier to complain ! I don't agree because there will be thousands of vulnerable people being treated badly & not complaining.
If we all complained they would see a ten fold increase in what they are already seeing ! Eventually I got lucky, I got a GP that listened & allowed me to tell him what I needed. He was willing to try some of the drugs I suggested. If he didn't wan't to give me a certain drug he explained why. By meeting eachother half way we have built a wonderful doctor-patient relationship.
I know my doctor-patient relationship is rare in comparison to what other people go through. Doctor's are less inclined to listen, less compassionate, less empathic & some come across as authoritarian control freaks - things must change in the Uk when it comes to General Practitioners !
The link below is the news that's hit the headlines today about the soaring complaints against doctors ! If only the other 1000's would speak up to like I wish I had 11yrs ago xx G
http://www.independent.co.uk/life-style/health-and-families/health-news/complaints-about-doctors-reach-record-high-8151975.html
Doctor's.
IV had some awful & some brilliant experiences with Gp's - I want to share some of these experiences with you & debate some of the issues raised in the news today about complaints about Gp's rising in the last year.
I moved to the place I live now 13yrs ago & registered with the local GP. I wasn't ill at this point so all was well & I found the GP was ok - although rarely saw him.
I became pregnant & had a horrific pregnancy leading to my youngest Ethan being born 2mths prem by emergency c-section (which is beleived to have accelerated my fibro).
Slowly I began to feel more & more ill, I had pain so bad in my right hand it felt crushed, the fatigue was keeping me bed bound for days. I had chronic IBS and to top it off was suffering from depression.
Again & again I went back to the GP again & again he didn't seem interested in what I was telling him. On one particular visit he lost his temper with me & shouted at me that I was causing my own *emotionally induced pain* it was in my head & that if I stopped being upset all the time -'d feel better.
My initial reaction as I'd been poorly for 2yrs by this time was to jump across his desk & smash his face in but I didn't I left in tears like nearly every other visit had ended.
I was in my 1st of my counselling diploma at the time & shared with my peers what had happened, I talked things through with my peers & decided it would be appropriate for me to tell the GP I was not happy with the way he had treated me, also how it had made me feel.
Feeling emotionally supported by my peers I went to see the GP again, this time though I took my husband with me as I didn't feel strong enough to go alone. I sat in front of the Gp's HUGE desk shaking & breathing off the hot prickly tears trying to escape down my face.
With my voice shaking I mustered the courage to say " I am angry at the way you spoke to me at my last appointment " what looked like rage to me spread across the Gp's face, he then roared at me " you have NO right to be angry with me " to which I retorted " are you saying I'm not allowed to have feelings " his response was to tell me "I no longer wish to be your GP I want you to leave now ".
A few days later I received a letter saying that I, my husband & 3 children had all been struck off ! I was more angry than I'd ever been.
I signed on with a new GP in the same building but with a different practice. My new GP was lovely he listened to me & importantly didn't tell me my pain was in my head, although he didn't know what was wrong so sent me to see a rhuematologist.
The rhuematologist did blood tests for arthritis, all my results came back negative. He told me it was most definately arthritis & sent me for physiotherapy. The pain caused by the physio was excruciating.
One day my mom called to tell me she'd been diagnosed with something called Fibromyalgia & would I like to see a consultant that specialised in the illness. At breaking point I agreed.
My parents paid for me to have a private appointment, I took with me AA book filled with symptoms, time I'd been ill for, everything I could think of. He asked me to go for a walk while he read it all.
When I walked back into the room he said " from reading this I am nearly 100% sure you have fibromyalgia, there is one test I need to do " that's when he tried pressing the fibromyalgia tender spots to which I had 17 out of the 20.
Almost immediately I felt releif ( I was unaware of the fight I was about to get into to get correct treatment) although left his offices with sleepong tablets to which he had said " you can take these for the rest of your life or until there is a cure for fibro, as your body will grow accustomed to them & eventually they won't make you sleep but will help with other symptoms ".
My GP was brilliant with me when I told him about my fibromyalgia diagnoses (I also immediately quit seeing the arthritis doc n stopped pysio) my GP sent me to a different pysio who was way more gentle with me meaning it didn't hurt as much doing the exercise.
BUT that was the beginning & end of my treatment for about a year, until that is all of a sudden the pain began to spread throughout my whole body. GP put me on amytriptylene for the pain. Unbeknown to me at that time me & amytriptylene do NOT mix well.
Unaware of other drugs available, my rights or anything else for that matter I bumbled along for another 2yrs until again a bad flare had led to a severe depression leading to me nearly having a breakdown.
I had joined Twitter in 200c but didn't really get it, being bed bound & feeling like I'd lost my mind my mobile phone became my only connection to other people so in early 2011 I began tweeting. I soon became aware of people called #Spoonies.
Spoonies being a person with a chronic invisable illness - the term had been coined from a writing by @bydls called 'The Spoon Theory' (this can be found on another page of this blog). I began to connect with these people & soon found the support I had wanted so much.
I learnt much about other drug treatments, the names of all the individual symptoms that made up fibromyalgia & with this new found knowledge I approached my GP. At first I asked for venlafaxine which he gave me, although the chronic pain persisted.
Slowly over time I asked for new drug treatments by name :) I am now on
Dihydracodeine 90mg slow release 3x a day
Gabapentin 600mg 3x a day
Venlafaxine 37.5mg 2x a day
.
Naproxin 500mg 2x a day
Zolpidem 10mg 1x a day
Levothyroxine 100Mc 1x a day
I also take vitamins B12 & rosehip with consent of my GP as although we think vitamins are good for us they can cause adverse affects if mixed with long term medication.
Ie: if taking Levothyroxine you shouldn't take sea kelp.
What I have learned is that even with a good GP I have to take the lead & tell him what I need. Learning the names of the serperate symptoms really helped to (I have a blog:
call it by its name).
I do look back at times & wish I'd made a complaint about the GP who struck me off as I have since learned he is like that with most of his patients ! He likes to be #right he doctor you stupid ignorant patient ! Although I had the strength to tell him how I felt at the time, I was to vulnerable to take it any further & also very much unaware of my rights as a patiemt.
So they say now complaints are rising because people find it easier to complain ! I don't agree because there will be thousands of vulnerable people being treated badly & not complaining.
If we all complained they would see a ten fold increase in what they are already seeing ! Eventually I got lucky, I got a GP that listened & allowed me to tell him what I needed. He was willing to try some of the drugs I suggested. If he didn't wan't to give me a certain drug he explained why. By meeting eachother half way we have built a wonderful doctor-patient relationship.
I know my doctor-patient relationship is rare in comparison to what other people go through. Doctor's are less inclined to listen, less compassionate, less empathic & some come across as authoritarian control freaks - things must change in the Uk when it comes to General Practitioners !
The link below is the news that's hit the headlines today about the soaring complaints against doctors ! If only the other 1000's would speak up to like I wish I had 11yrs ago xx G
http://www.independent.co.uk/life-style/health-and-families/health-news/complaints-about-doctors-reach-record-high-8151975.html
Wednesday, 12 September 2012
Living With Depression.
SpoonieLife
Depression.
Depression is one of the parts that make up fibromyalgia, it can take us in a downward spiral sometimes slowly, sometimes so quick you don't know what hit you.
Depression can be mild or severe & there are different types. I suffer with bouts of clinical depression due to my illness, as a trained counsellor I have gotten much better at recognising the signs, and I then deal appropriately with it, whether it's a trip to see my doctor, exercise to release endorphines , also talking therapys.
But what about the people that don't know how to recognise the signs, mild depression can soon become much worse if not treated correctly.
I have been at both ends of the spectrum but when in severe depression I used to hide away, hated going out, let go of personal care issues, didn't eat, cried all the time, felt there was no way out.
I felt everyone in the world was out to get me, that I couldn't do right for wrong, I was lonely but all I knew to do to cope was self harm, a technique I'd used as a teenager to deal wth negative emotions.
The self harm was just a sticking plaster, which soon came undone & that's when the feelings of suicide came into my head. I'd lay awake at night planning my death.
I knew I wouldn't be able to cut my wrists nor poison myself so would think about jumping off a bridge into traffic (then decided that's to dangerous for the drivers of the cars, I may want to die but I don't want to be reasponsible for causing the death of others).
I imagined jumping in front of a train but worried I'd b so much in bits my mom wouldn't be able to identify me.
So on and so on these thoughts passed through my head, then I realised there are many ways to commit suicide & I was giving a reason as o why that way wouldn't work or me.
I soon realised I didn't want to die, I had a reason to live (I had 2 small children at the time). With my choice made that suicide wasn't what I wanted, what I wanted was understanding and help.
My doctor sent me for counselling, he also put me on anti-depressants which began to work after about a month, combined with my counselling & Being monitored by my doctor the blackness started to lift.
See that's the thing with depression it focuses our minds on all of the negatives in life and rarely the possitives. The more negative thoughts we have the more severe the depression.
Depression is mental illness, it needs to be recognised as such to as the impact it can have on an individual dependent on variations can be catastrophic.
There are ways to get better, my advice always seek out professional hlp either a doctor, nurse, counsellor anyone that can help you refocus your mind on the positives.
Asking or help can be hard especially in severe depression (I had a breakdown once) what people need to know is help is available, that they are not alone nor abnormal - as when in severe depression its easy to hide away because our heads are not functioning in the way they should be, they are working at a limited capacity.
Yet again another invisable, hard for others to see illness. Then there are the non beleivers !
Invisable is hard to live with because what can't be seen can be judged - this seems to be how it goes.
Educating yourself on your depression will help, the more knowledge you have the more you arm yourself against bad repeat episodes.
It's possible to get you and your life back to full capacity but for this to happen you must be a willing participant - wishing those with depression all Te best & I hope your recovery is peaceful.
Xx G
Depression.
Depression is one of the parts that make up fibromyalgia, it can take us in a downward spiral sometimes slowly, sometimes so quick you don't know what hit you.
Depression can be mild or severe & there are different types. I suffer with bouts of clinical depression due to my illness, as a trained counsellor I have gotten much better at recognising the signs, and I then deal appropriately with it, whether it's a trip to see my doctor, exercise to release endorphines , also talking therapys.
But what about the people that don't know how to recognise the signs, mild depression can soon become much worse if not treated correctly.
I have been at both ends of the spectrum but when in severe depression I used to hide away, hated going out, let go of personal care issues, didn't eat, cried all the time, felt there was no way out.
I felt everyone in the world was out to get me, that I couldn't do right for wrong, I was lonely but all I knew to do to cope was self harm, a technique I'd used as a teenager to deal wth negative emotions.
The self harm was just a sticking plaster, which soon came undone & that's when the feelings of suicide came into my head. I'd lay awake at night planning my death.
I knew I wouldn't be able to cut my wrists nor poison myself so would think about jumping off a bridge into traffic (then decided that's to dangerous for the drivers of the cars, I may want to die but I don't want to be reasponsible for causing the death of others).
I imagined jumping in front of a train but worried I'd b so much in bits my mom wouldn't be able to identify me.
So on and so on these thoughts passed through my head, then I realised there are many ways to commit suicide & I was giving a reason as o why that way wouldn't work or me.
I soon realised I didn't want to die, I had a reason to live (I had 2 small children at the time). With my choice made that suicide wasn't what I wanted, what I wanted was understanding and help.
My doctor sent me for counselling, he also put me on anti-depressants which began to work after about a month, combined with my counselling & Being monitored by my doctor the blackness started to lift.
See that's the thing with depression it focuses our minds on all of the negatives in life and rarely the possitives. The more negative thoughts we have the more severe the depression.
Depression is mental illness, it needs to be recognised as such to as the impact it can have on an individual dependent on variations can be catastrophic.
There are ways to get better, my advice always seek out professional hlp either a doctor, nurse, counsellor anyone that can help you refocus your mind on the positives.
Asking or help can be hard especially in severe depression (I had a breakdown once) what people need to know is help is available, that they are not alone nor abnormal - as when in severe depression its easy to hide away because our heads are not functioning in the way they should be, they are working at a limited capacity.
Yet again another invisable, hard for others to see illness. Then there are the non beleivers !
Invisable is hard to live with because what can't be seen can be judged - this seems to be how it goes.
Educating yourself on your depression will help, the more knowledge you have the more you arm yourself against bad repeat episodes.
It's possible to get you and your life back to full capacity but for this to happen you must be a willing participant - wishing those with depression all Te best & I hope your recovery is peaceful.
Xx G
Friday, 7 September 2012
Elaine & Fibromyalgia
Elaine & Fibromyalgia
By Elaine Rush
I'm 33 and was diagnosed with fibromyalgia a few years ago but have had symptoms going back to early childhood.
I had sleeping problems as a baby/toddler and then various aches and pains that were explained to me as 'growing pains' or as a 'low pain threshold'. As I got older, I became increasingly frustrated with the limitations that my pain forced upon me. I have had to give up many things over the years. Driving lessons, guitar lessons, yoga and gardening to name but a few things . I missed time from school, college and university, and even my family began to think I was just a 'typical lazy teenager'.
As I got older, my condition got steadily worse. For me it's never really been a 'flare up and down' kind of thing. It's constant pain, fatigue, sleep problems and muscle/ligament injuries. And that's if I don't overdo it. If I do, I'm flat on my back with migraine-type headaches, total muscle spasms and unmanageable pain in my neck, arms, legs, back, hands and feet. When I say overdo it, I mean do something outside of my usual routine. I use the word 'routine' loosely as for me, my condition dictates my day, so plans and schedules are difficult. Although being spontaneous is impossible too as it takes me so long to get ready/get started with stuff.
After my diagnosis, I was so relieved to be able to put a name to what was wrong with me because by then even I was beginning to think I was going mad! I'd had endless tests and appointments and sometimes been treated like a hypochondriac/liar/complainer/drug seeker by limitless medical professionals and some other people in my life too. At least once I knew what it was, I could learn about my condition and at least try to help myself. A diagnosis doesn't get rid of all the doubters though. Far from it. Lots of people think that fibromyalgia is 'all in your head'. To those people I say "It's not. I have the physical swellings and muscle spasms to prove it".
Almost 4 years ago I was forced to give up work because of my fibromyalgia. I had worked at the same place for 12 years, enjoyed my job and was very good at it. But it had got to the point where my life was just work and sleep. And even then, I often had to leave work in the middle of a shift because I was too ill to carry on. Eventually I was so run-down and exhausted that my back gave in completely and I was flat on my back for about a month. After that, my condition deteriorated further and now I spend my days at home, not even able to do housework or proper cooking. I have hobbies like reading and drawing but can't do them often or for very long, so mostly I watch tv. Luckily, I have the most awesome husband in the world. He never complains about the household stuff that I am unable to do, and he is also very supportive. I get backrubs every day and he makes sure that I know I am still needed, valued and have a purpose.
This is so important to me because my 'usefulness' and part of my identity was lost when I was no longer able to work and support myself. It was soul destroying to have to give up the job I loved because until then, I had ALWAYS worked.
In addition to the guilt and the sadness of not being able to get up and go out to work, I struggle with keeping my sickness benefits because I have to convince their representatives that I'm telling the truth and not just choosing to stay at home for the fun of it. I absolutely don't mind going to medicals and sharing medical info with these people because I understand and agree that they need to check on those of us who claim sickness benefits. However, it's not easy to explain a complicated condition and the extent of how it affects my every day life in a 30min appointment. I can't for the life of me understand why anyone would choose to stay home instead of going to work, but unfortunately I'm often seen as one of these lazy scrounging types simply because those who don't live with it find it so hard to believe that a young person who looks outwardly healthy has a debilitating medical condition like fibromyalgia.
Sadly, it's not just these people who don't 'get it'. I've lost friends because they can't or don't want to understand that most days I can't go out, so they always have to come to me. I'd say that only my husband truly knows what it's like because he sees it everyday. My parents are supportive but there are many others who don't understand. This is upsetting and it hurts me to know that people either don't believe there's much wrong with me, or think that fibromyalgia is just 'hurting a bit'. Alternatively there are those who believe totally and therefore see only my fibromyalgia when they look at me and then they feel sorry for me, which I don't want. I'm still the same on the inside as everyone else. When it snows I want to go outside and have snowball fights, when it's sunny I want to go and do the gardening, when there's a party I want to be there and I want to dance. But I can't. That's difficult to accept for someone as strong minded and independent as I am.
You may notice that the part of my fibromyalgia I have left until last to talk about is the 'actual' fibro stuff; the pain, the fatigue, the fibrofog - memory and concentration problems, sleep problems, muscle spasms and injuries. This is because I don't really know how to tell you about it. There's no way to express it completely in words, but the best way to describe it is to say that everything hurts every day but the parts of me that hurt the most changes daily or hourly. The pain is sometimes aches, sometimes pains and sometimes a real raw soreness that makes me feel like my nerves are jumpy and jangling. It never goes away but sometimes gets worse. My whole body feels like it's all twisted up. I've been tired and had a headache for as long as I can remember and 'fibrofog' means that I can't always think clearly or remember the right words for what I want to say. Fog is definitely the right way to describe it because it does feel like I'm wading though fog physically and mentally all the time. It's certainly no fun and I'd love to wake up tomorrow and find it had magically vanished overnight. Until then, I just do the best I can. It may not be much, or sometimes may not be anything at all, but understand that behind the fibro, I'm just a girl who is trying to concentrate on the happy stuff, and who is eternally grateful for my husband and the other great people in my life.
Thanks for reading :)
By Elaine Rush
I'm 33 and was diagnosed with fibromyalgia a few years ago but have had symptoms going back to early childhood.
I had sleeping problems as a baby/toddler and then various aches and pains that were explained to me as 'growing pains' or as a 'low pain threshold'. As I got older, I became increasingly frustrated with the limitations that my pain forced upon me. I have had to give up many things over the years. Driving lessons, guitar lessons, yoga and gardening to name but a few things . I missed time from school, college and university, and even my family began to think I was just a 'typical lazy teenager'.
As I got older, my condition got steadily worse. For me it's never really been a 'flare up and down' kind of thing. It's constant pain, fatigue, sleep problems and muscle/ligament injuries. And that's if I don't overdo it. If I do, I'm flat on my back with migraine-type headaches, total muscle spasms and unmanageable pain in my neck, arms, legs, back, hands and feet. When I say overdo it, I mean do something outside of my usual routine. I use the word 'routine' loosely as for me, my condition dictates my day, so plans and schedules are difficult. Although being spontaneous is impossible too as it takes me so long to get ready/get started with stuff.
After my diagnosis, I was so relieved to be able to put a name to what was wrong with me because by then even I was beginning to think I was going mad! I'd had endless tests and appointments and sometimes been treated like a hypochondriac/liar/complainer/drug seeker by limitless medical professionals and some other people in my life too. At least once I knew what it was, I could learn about my condition and at least try to help myself. A diagnosis doesn't get rid of all the doubters though. Far from it. Lots of people think that fibromyalgia is 'all in your head'. To those people I say "It's not. I have the physical swellings and muscle spasms to prove it".
Almost 4 years ago I was forced to give up work because of my fibromyalgia. I had worked at the same place for 12 years, enjoyed my job and was very good at it. But it had got to the point where my life was just work and sleep. And even then, I often had to leave work in the middle of a shift because I was too ill to carry on. Eventually I was so run-down and exhausted that my back gave in completely and I was flat on my back for about a month. After that, my condition deteriorated further and now I spend my days at home, not even able to do housework or proper cooking. I have hobbies like reading and drawing but can't do them often or for very long, so mostly I watch tv. Luckily, I have the most awesome husband in the world. He never complains about the household stuff that I am unable to do, and he is also very supportive. I get backrubs every day and he makes sure that I know I am still needed, valued and have a purpose.
This is so important to me because my 'usefulness' and part of my identity was lost when I was no longer able to work and support myself. It was soul destroying to have to give up the job I loved because until then, I had ALWAYS worked.
In addition to the guilt and the sadness of not being able to get up and go out to work, I struggle with keeping my sickness benefits because I have to convince their representatives that I'm telling the truth and not just choosing to stay at home for the fun of it. I absolutely don't mind going to medicals and sharing medical info with these people because I understand and agree that they need to check on those of us who claim sickness benefits. However, it's not easy to explain a complicated condition and the extent of how it affects my every day life in a 30min appointment. I can't for the life of me understand why anyone would choose to stay home instead of going to work, but unfortunately I'm often seen as one of these lazy scrounging types simply because those who don't live with it find it so hard to believe that a young person who looks outwardly healthy has a debilitating medical condition like fibromyalgia.
Sadly, it's not just these people who don't 'get it'. I've lost friends because they can't or don't want to understand that most days I can't go out, so they always have to come to me. I'd say that only my husband truly knows what it's like because he sees it everyday. My parents are supportive but there are many others who don't understand. This is upsetting and it hurts me to know that people either don't believe there's much wrong with me, or think that fibromyalgia is just 'hurting a bit'. Alternatively there are those who believe totally and therefore see only my fibromyalgia when they look at me and then they feel sorry for me, which I don't want. I'm still the same on the inside as everyone else. When it snows I want to go outside and have snowball fights, when it's sunny I want to go and do the gardening, when there's a party I want to be there and I want to dance. But I can't. That's difficult to accept for someone as strong minded and independent as I am.
You may notice that the part of my fibromyalgia I have left until last to talk about is the 'actual' fibro stuff; the pain, the fatigue, the fibrofog - memory and concentration problems, sleep problems, muscle spasms and injuries. This is because I don't really know how to tell you about it. There's no way to express it completely in words, but the best way to describe it is to say that everything hurts every day but the parts of me that hurt the most changes daily or hourly. The pain is sometimes aches, sometimes pains and sometimes a real raw soreness that makes me feel like my nerves are jumpy and jangling. It never goes away but sometimes gets worse. My whole body feels like it's all twisted up. I've been tired and had a headache for as long as I can remember and 'fibrofog' means that I can't always think clearly or remember the right words for what I want to say. Fog is definitely the right way to describe it because it does feel like I'm wading though fog physically and mentally all the time. It's certainly no fun and I'd love to wake up tomorrow and find it had magically vanished overnight. Until then, I just do the best I can. It may not be much, or sometimes may not be anything at all, but understand that behind the fibro, I'm just a girl who is trying to concentrate on the happy stuff, and who is eternally grateful for my husband and the other great people in my life.
Thanks for reading :)
Insomnia (caught in the nothingness) Poem by GeorgirGirlArt
SpoonieLife
Insomnia
I'm laid here awake in the nothingness
Surrouded by the dark
With nothing but my own madness for company
Waiting, waiting patiently for you to come & take me.
The pitch of the night envelopes me
Pulls me in tight & still you don't come
Still I don't sleep as you hold me here in the nothingness
My body limp from tiredness, my brain tuned into my reality, my life.
As colours pass across my half shut lids I think of you
I wait for you, I beg for you to come to me to hear my pleas
Then the colours fade & darkness once again takes over
Until again it has me in its nothingness.
A world where the dark in the night sky is prominet
A place from where the moon shines brightly
A world I should not exist in
Yet you return me here again & again.
When tiredness feels like sanity draining from my mind
I lay there in the nothingness & the dark
I close my eyes & pull in close the pitch dark
I stop the march of thoughts that casscade through my mind
Before I know it after hours of hope
you've wrapped me up in a little dream boat
You've come & you've taken me just as I asked
Thank you for letting me sleep at last.
Insomnia
I'm laid here awake in the nothingness
Surrouded by the dark
With nothing but my own madness for company
Waiting, waiting patiently for you to come & take me.
The pitch of the night envelopes me
Pulls me in tight & still you don't come
Still I don't sleep as you hold me here in the nothingness
My body limp from tiredness, my brain tuned into my reality, my life.
As colours pass across my half shut lids I think of you
I wait for you, I beg for you to come to me to hear my pleas
Then the colours fade & darkness once again takes over
Until again it has me in its nothingness.
A world where the dark in the night sky is prominet
A place from where the moon shines brightly
A world I should not exist in
Yet you return me here again & again.
When tiredness feels like sanity draining from my mind
I lay there in the nothingness & the dark
I close my eyes & pull in close the pitch dark
I stop the march of thoughts that casscade through my mind
Before I know it after hours of hope
you've wrapped me up in a little dream boat
You've come & you've taken me just as I asked
Thank you for letting me sleep at last.
Saturday, 1 September 2012
Call it by it's name & quicker action is the desired result . . .
SpoonieLife
Dealing With The Doctor's !
When all my problem's first started they tried to get me to think it was all in my head & hey yanno what they nearly did. I was severely depressed, everthing that could hurt, hurt, ache, ached. The fatigue was so bad I'd fall asleep on public transport, struggle to stay awake at family gatherings, then when I did sleep I couldn't wake up.
I'd fall into some kind of comatosed sleep, my family would manage to wake me for a few minutes at a time to check on me & I won't even remember. All of the illnesses I have that are aggravated by stress where very prominent in my daily life. I was stuck in a vicious circle pain, fatigue, depression - depression equalled prolonged pain, fatigue & more depression.
Until that is my mom was dx with fibro & realised all of a sudden what was wrong with me. I immediately got an appointment with a Rheumatologist now not all rhuem's believe in fibro as an illness no matter how many times your arthritis results come back negative. Phone the receptionist of rhuem consultants in your area & ask does their boss deal with fibro patients if she says not really say "thank's for your time" & put the phone down.
It is essential to get a rhuem that believes in fibro - the news for me was yes no mistaking it I had fibro. Wow the relief I felt was amazing I had a name for what was wrong with me & with that name came an acceptance from my doc's meaning I was given better treatment. That's where I began to realise they where trying to treat my fibro as a whole.
I decided I couldn't just go the doctor n say that pain in my chest cus that could be a few things I needed to go & say "my costochondritis is blah blah blah.
"I have blah blah in my muscuskeletal system"
"my osteoarthritis is playing up" not just my hands hurt (as any of my conds can have that effect. I know my hands I know what is fibro & what is my arthritis. The pain is different also the way my hands react to that pain.
Also the mega important bit a doctor that will listen to you, a consistent doctor (as seeing many at a surgery can lead to disagreements b'tween doctors & having ur meds changed with no notice) !
I had found a GP that listened, knew my background, drug list, tolerances, but I realised I was being to general with him, he had often said he "isn't a FMS expert". I wondered if maybe he expected me to know the names of all the seperate complaints I have that make up Fibromyalgia & Dercums Disease.
I studied the musculoskeltal system & started to study only the places in which I am affected then compared my symptoms to relative names ie: the severe chest pain had is costochondritis - it was also really important not just to say chest pain. Detail a doctor that cares & wants to help need proper details to dx us.
My chest pain was also, shoulder pain, burning, muscular spasms - calling it by its name also made a difference the doctor after me suffering for years with "chest pain" gave me drugs for costochondritis :)
I have found that putting that little bit of effort in when I see my doc's has led to a much better relationship. I feel supported by them & I have been told a few times now "our job would be so much easier if more patients where like you" fab compliment to know that I am helping & educating my doc's in what my conditions are really made up of. Of course in the process getting what I need "the correct treatment & a lil understanding" ! because that's all iv ever wanted from them xx
Georgie
Dealing With The Doctor's !
When all my problem's first started they tried to get me to think it was all in my head & hey yanno what they nearly did. I was severely depressed, everthing that could hurt, hurt, ache, ached. The fatigue was so bad I'd fall asleep on public transport, struggle to stay awake at family gatherings, then when I did sleep I couldn't wake up.
I'd fall into some kind of comatosed sleep, my family would manage to wake me for a few minutes at a time to check on me & I won't even remember. All of the illnesses I have that are aggravated by stress where very prominent in my daily life. I was stuck in a vicious circle pain, fatigue, depression - depression equalled prolonged pain, fatigue & more depression.
Until that is my mom was dx with fibro & realised all of a sudden what was wrong with me. I immediately got an appointment with a Rheumatologist now not all rhuem's believe in fibro as an illness no matter how many times your arthritis results come back negative. Phone the receptionist of rhuem consultants in your area & ask does their boss deal with fibro patients if she says not really say "thank's for your time" & put the phone down.
It is essential to get a rhuem that believes in fibro - the news for me was yes no mistaking it I had fibro. Wow the relief I felt was amazing I had a name for what was wrong with me & with that name came an acceptance from my doc's meaning I was given better treatment. That's where I began to realise they where trying to treat my fibro as a whole.
I decided I couldn't just go the doctor n say that pain in my chest cus that could be a few things I needed to go & say "my costochondritis is blah blah blah.
"I have blah blah in my muscuskeletal system"
"my osteoarthritis is playing up" not just my hands hurt (as any of my conds can have that effect. I know my hands I know what is fibro & what is my arthritis. The pain is different also the way my hands react to that pain.
Also the mega important bit a doctor that will listen to you, a consistent doctor (as seeing many at a surgery can lead to disagreements b'tween doctors & having ur meds changed with no notice) !
I had found a GP that listened, knew my background, drug list, tolerances, but I realised I was being to general with him, he had often said he "isn't a FMS expert". I wondered if maybe he expected me to know the names of all the seperate complaints I have that make up Fibromyalgia & Dercums Disease.
I studied the musculoskeltal system & started to study only the places in which I am affected then compared my symptoms to relative names ie: the severe chest pain had is costochondritis - it was also really important not just to say chest pain. Detail a doctor that cares & wants to help need proper details to dx us.
My chest pain was also, shoulder pain, burning, muscular spasms - calling it by its name also made a difference the doctor after me suffering for years with "chest pain" gave me drugs for costochondritis :)
I have found that putting that little bit of effort in when I see my doc's has led to a much better relationship. I feel supported by them & I have been told a few times now "our job would be so much easier if more patients where like you" fab compliment to know that I am helping & educating my doc's in what my conditions are really made up of. Of course in the process getting what I need "the correct treatment & a lil understanding" ! because that's all iv ever wanted from them xx
Georgie
An Open Letter To Able Bodied People with Faculties.
SpoonieLife
We Are Still Humans "Open Letter To Those That Dont Have Fibro or CFS"
OPEN LETTER TO THOSE THAT DONT HAVE FIBROMYALGIA OR CFS
Having CFS means many things change, and a lot of them are invisible. Unlike AIDS and Cancer, most people do not understand even a little about CFS and its effects, and of those that think they know, many are actually mis-informed. In the spirit of informing those who wish to understand …
… These are the things that I would like you to understand about me before you judge me…
Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day flat on my back in bed and I might not seem like great company, but I’m still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.
Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker that ever. Please, don’t say, “Oh, you’re sounding better!”. I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome.
Please understand that being able to stand up for five minutes, doesn’t necessarily mean that I can stand up for ten minutes, or an hour. It’s quite likely that doing that five minutes has exhausted my resources and I’ll need to recover – imagine an athlete after a race. They couldn’t repeat that feat right away either. With a lot of diseases you’re either paralyzed or you can move. With this one it gets more confusing.
Please repeat the above paragraph substituting, “sitting up”, “walking”, “thinking”, “being sociable” and so on … it applies to everything. That’s what a fatigue-based illness does to you.
Please understand that chronic illnesses are variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the kitchen. Please don’t attack me when I’m ill by saying, “But you did it before!”. If you want me to do something, ask if I can and I’ll tell you. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don’t take it personally.
Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. CFS may cause secondary depression (wouldn’t you get depressed if you were stuck in bed for years on end!?) but it is not caused by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct – if I could do it, I would.
Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m doing something. CFS does not forgive.
Please understand that I can’t spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness.
If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another.
At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with CFS then we’d know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with CFS, if something worked we would KNOW.
If after reading that, you still want to suggest a cure, then do it, preferably in writing, but don’t expect me to rush out and try it. If I haven’t had it suggested before, I’ll take what you said and discuss it with my doctor. He’s open to new suggestions and is a great guy, and he takes what I say seriously.
Please understand that getting better from an illness like this can be very slow. People with CFS have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out.
I depend on you – people who are not sick – for many things.
But most importantly, I ask that you 'try' to understand me.
We Are Still Humans "Open Letter To Those That Dont Have Fibro or CFS"
OPEN LETTER TO THOSE THAT DONT HAVE FIBROMYALGIA OR CFS
Having CFS means many things change, and a lot of them are invisible. Unlike AIDS and Cancer, most people do not understand even a little about CFS and its effects, and of those that think they know, many are actually mis-informed. In the spirit of informing those who wish to understand …
… These are the things that I would like you to understand about me before you judge me…
Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day flat on my back in bed and I might not seem like great company, but I’m still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.
Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker that ever. Please, don’t say, “Oh, you’re sounding better!”. I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome.
Please understand that being able to stand up for five minutes, doesn’t necessarily mean that I can stand up for ten minutes, or an hour. It’s quite likely that doing that five minutes has exhausted my resources and I’ll need to recover – imagine an athlete after a race. They couldn’t repeat that feat right away either. With a lot of diseases you’re either paralyzed or you can move. With this one it gets more confusing.
Please repeat the above paragraph substituting, “sitting up”, “walking”, “thinking”, “being sociable” and so on … it applies to everything. That’s what a fatigue-based illness does to you.
Please understand that chronic illnesses are variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the kitchen. Please don’t attack me when I’m ill by saying, “But you did it before!”. If you want me to do something, ask if I can and I’ll tell you. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don’t take it personally.
Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. CFS may cause secondary depression (wouldn’t you get depressed if you were stuck in bed for years on end!?) but it is not caused by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct – if I could do it, I would.
Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m doing something. CFS does not forgive.
Please understand that I can’t spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness.
If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another.
At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with CFS then we’d know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with CFS, if something worked we would KNOW.
If after reading that, you still want to suggest a cure, then do it, preferably in writing, but don’t expect me to rush out and try it. If I haven’t had it suggested before, I’ll take what you said and discuss it with my doctor. He’s open to new suggestions and is a great guy, and he takes what I say seriously.
Please understand that getting better from an illness like this can be very slow. People with CFS have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out.
I depend on you – people who are not sick – for many things.
But most importantly, I ask that you 'try' to understand me.
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