Invisable, not seen, hidden and if hiding it, its cus I can't prove iv got it.
Trapped wind is invisable & painful so that means every human is a liar ?
See the thing is my invisable changes daily making it hard for people to understand !
Iv had mixed illnesses for a few years I was dx with endrimetriosis at 16, CFS when I was 18, FMS at 31 (although consultant that dx me thinks I'd been suffering since 18 with a milder version of FMS), Osteoarthritis 31, underactive thyroid 39, dercums disease 39 (although iv been showing symptoms for 13yrs).
OK so those are the disabilities and if you know about them you will have an idea of what live with, what my life may be like.
I accepted I was ill a long time ago and with that came an optimism of what can do now then ? a curiosity of these new physical boundaries that had been placed on me.
I had become obese over a period of years and carrying the extra weight just aggravated my fibro, especially anything from my hips down. I decided I was to old and to fragile for a crappy fad diet so signed up at my local gym.
At first I couldn't really do much, my weight and pain combined made it difficult but I persisted with the routine I had been given which was gentle but strengthening. The pain after exercise bloody hurt for the first few months but once all the new muscles I was using where used to it I didn't hurt from the exercise at all.
I didn't really notice much improvement in the fibro in the first few months but then the weight started to come off, as I shed the pounds I found that I could do more exercise, had less daily pain in my hips, knee and ankles. My muscle spasms where becoming less, sleep was improving and all of this was helping my emotional well being to.
I wasn't as tired during the day either or falling asleep here, there and everywhere, feeling bored and getting frustrated I decided to look for work as a volunteer. I hadn't worked for many years yet I have an advanced diploma in Person Centered Counselling. It felt time to put my education and experience to good use.
Going for a volunteer job meant I picked my days, hours, availability which was great. I applied for a position as a counsellor to an agency pressing send on the application was scary. I started off 1 day a week just for 4hrs and loved it. It got me out of the house, I was connecting with other people, learning new skills, I felt that I was giving a little back to society because I am on state benefits.
Getting that job gave me my self respect back and once I had reconnected to that I have been unstoppable. I now volunteer 2 days a week and on one of those days I am joint co-ordinator of an alcohol cessation group. I have been on some amazing courses run by the agency I volunteer for :) all this amazing stuff for my CV.
That is if I can ever return to even part time work again, at this moment in my condition with the dercums n osteoarthritis being degenerative I doubt it. Until I can no longer work I will stay at the agency volunteering because I know I am helping save lives. People can look down on me n say "your only a volunteer n on state benefits" but I can guarentee I will feel more self fullfilled than most.
I am proud of my daily achievements as I do struggle, I a on many different medications, some with awful side effects and others so addictive if I miss a dose I go into withdrawal which is an ugly place to be. My life my only rotate around 3 things but those 3 things are all I need to be whole.
I have learned not to care what others think, to speak my mind (always with respect), to learn about my disabilities back to front and educate others (which led to me becoming n advocate for fibro).
Learning about my disabilities taught me about triggers the biggest being emotions when heightened ie: scared, upset, anxious, excited. I found that people around me who judged me constantly and didn't take the time to want to understand my disabilities caused me the greatest amount of stress.
Slowly over time I have distanced myself from these people this also included family as I do NOT believe in that blood's thicker than water shit when I'm being treated disrespectfully. I as a human have the right to choose who I want in my life so I did, I'm not saying it was easy cus t wasn't but it was the best thing I ever did because I removed the biggest bag of stress causing shit from my life.
I have learned that living in the now what is important, to enjoy what I can do, celebrate what I learn to do and strive to be al that I can be. Yanno know what I'm doing pretty good at it.
Do I still suffer with severe pain, muscle spasms, fatigue and all the rest of it ? yeah daily but I'm here, I'm alive and so far still sound of mind, I also know there are other people with worse disabilities than mine who if given the choice would rather have what I'v got, and that really put things into perspective for me.
Xx Georgie xX
This really touched my heart, the part about distancing yourself from negative friends & family, really hit home. Be blessed my #spoonie sister.ReplyDelete
Thank you for your comment its nice to get feedback - its lovely to know you where touched by what iv shared as it shows a greater level of understanding.Delete
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