hi friends! i wasn’t sure what to do my first proper bit of writing on so i thought i would write about something very prominent in my life, Fibromyalgia, and how its changed my life and how i try to cope with it.
if you don’t know what fibromyalgia is, i’ll give you the textbook definition, and then i’ll explain it in the way it was explained to me.
fibromyalgia is a long term condition which causes wide-spread pain throughout the body. there are so many symptoms that make up the diagnosis, some of which are
- an increased sensitivity to pain
-muscle stiffness
-problems sleeping (getting to sleep, staying asleep, feeling refreshed once asleep) which cause fatigue
-“fibro fog” which can be difficulty processing or remembering things, which can cause headaches too.
-irritable bowl syndrome (IBS)
the way it was explained to me was that my nervous system was effectively working overtime and extremely sensitive, and that because of this my pain receptors are heightened, meaning they sometimes think that our body is in pain, when really there is nothing causing this pain except from the pain receptors “having a flare up”.
there is no known specific cause, there are many theories as to why or how its caused though with some of the theories being abnormal hormone levels or a chemical imbalance, it could be triggered by stress or a psychologically traumatic event and so many more. it affects everyone differently, but i’ll tell you about my personal experience.
i woke up on a random sunday last year and my body just hurt. it felt like i’d been buried under concrete and couldn’t move my body. i eventually could move again but the pain i felt, specifically in my legs, was like nothing i’d ever felt before, and moving about was very hard for me. i couldn’t walk properly and was walking very slow, i needed someone to hold onto for support walking and if walking any more than say 5-10 metres i would need to sit down, which limited my life a lot. this lasted about 10 months. i had to stop working, i couldn’t go anywhere, couldn’t see my friends, i had to stop all physical activity because my body just wouldn’t let me. it was horrible and i felt like i was trapped in a broken body. a body that no longer could work and that my life would forever be like this. i relied on other people so much more than normal. i needed help to walk to and from the toilet in the night, preparing meals, i still can’t shower unaided or get in and out the bath. its really hard for me to talk about because i find it embarrassing. its not embarrassing and if i met someone who was going through this the last thing i would think would be “god that’s embarrassing” but because its me, it feels it. its debilitating. not being able to do basic tasks that most people should be able to do. being ashamed. being so dependant on others to the point they are having to change their lifestyle for you. i had to be on sick leave for my job, and although they were so incredibly supportive and patient with me i handed my notice in after 10 months sick leave. thankfully the manager said when i eventually am better i can contact him and he will take me back on or put me top of the list when a job is available. i’m hoping that one day i can go back there. hearing how highly everyone spoke about me made me feel better about myself and just kind of gave me those affirmations i needed to hear. i am useful. i am valued. i am appreciated.
one big part i’ve struggled with i accepting fibro and accepting that this is my life for now. its hard to remember i’m the same person i was before , because physically i am so far from it. i’ve put on weight, my face shape has changed, the clothes i own don’t fit so i just wear the same two pairs of joggers and the same oversized tops on a rotation. i’m very self conscious of myself now whereas the me 1 year ago was confident and outgoing, i wore what i wanted and never gave myself a second thought. my face was thinner, i was happy. my mental health has taken such a toll, watching everyone move forward with their lives while i’m still stuck in the same place (literally). it feels like i’m grieving my old self and its horrible. its a feeling nobody understands unless they’ve gone through it. and a horrible part is i can’t change it. the weight wont come off until i start moving again, which can’t happen anytime soon. i wont get over my anxieties until i face them which i also can’t do at th minute. it sounds like a lot of “i can’t” and mot a lot of “i can” but its difficult when you have a disability. i also have been diagnosed with ADHD which makes the struggle 10 times worse. the burnouts are awful and the mental aspect of both the fibro and ADHD just is an awful combination.
but onto some positives i have made progress. i see a physio for my legs and knees and he says he has seen progress which makes me very proud of myself. i can walk up nd down stairs myself (albeit slow) and i can walk myself to the toilet. bathing and showering is something i cannot do though, and waking is still a struggle. the anxiety is still very present and it doesn’t look like she’s gong to disappear anytime soon. but i have a supportive family and an amazing partner who helps me whenever he can. i couldn’t have done this without them. i’ve lost many friends as well, as my life just came to a complete close. its been really difficult. one of the most difficult times of my life.
it took a while as well for me to be listened to. when i first spoke to my GP about it they did the usual blood tests and they found i was slightly deficient in iron and said if the supplements don’t help then it could be coeliac, but we never got that far. one day i noticed my kneecaps had swelled, and they were almost double the size. they both just had two massive lumps on them but the doctors implied it was due to weight gain i kept going back asking for more help as the chest pains i had were getting worse and they just said it was hormonal and the chest pains were due to anxiety and not to worry. one day they were so bad i went into A&E and they found nothing but as they assessed my legs they did agree the pain i was in from my legs wasn’t normal and that the swelling was not from weight gain and was definitely abnormal. they then referred me to physio for the first time. the guy was nice and after 4 sessions we came to the conclusion that it was not working and was just hurting too much to continue and that was when he first mentioned that he thinks it could be fibro. he then referred me back to the GP who then referred me to rheumatology. long story short i had scans and tests (with a big needle) and they diagnosed me with fibromyalgia. normally they then refer you back to the GP but the nurse i saw said that he wants to treat me through the hospital with rehabilitative physio and that he wants to make sure that i do get better.
i know everyone with fibro has had a different experience with the whole journey. everyone experiences different symptoms and different ways of being diagnosed. this was my experience. i haven’t gone into the pain etc as i find i don’t really know how to explain it or put it into words. if anyone would like to share their experience in the comments then i would love to hear them! (not love that you’ve gone through it, its awful) if anyone has even read this far then i hope i’ve given a bit of insight into a fibro journey. even if nobody has read its been good to get this out into words. thanks for reading1
love and hugs, D x
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