This will not necessarily be a light and fluffy post, but it's not something I usually write about and I try not to talk about it all the time, but I think maybe it's time I wrote something about it not only for my own sanity, but for those of you out there who may be suffering from something similar, so here goes. There will be some expletives in here so if that offends you then here's your warning.
I have Fibromyalgia which although I think it is a stupid name, makes sense in Latin, so there is that. This is not the worst case scenario for me, it is not life threatening or degenerative (although I do find it harder to do things sometimes) and will not reduce my life expectancy, so in a way I am grateful, the kind of way you might be grateful for only breaking your foot when you fall down the stairs. But I am mostly positive (at least it feels that way today.)
Fibromyalgia is a chronic pain condition which involves muscular pain but also nerve pain. To be perfectly honest I'm not entirely sure what it is, and neither was the doctor, but I can say that it causes some pretty serious fatigue at times and some considerable pain. I am pretty much always in pain to a greater or lesser degree, but as I have already said, it's not degenerative and it's not going to kill me. There is no cure at the moment as it seems that no one can figure out the cause or what it actually is. But there's lots of research being done.
One of the main reasons I wanted to write this post was to talk about going to the doctors and getting a diagnosis as this was an especially long and drawn out and at times mentally draining time for me, and if any of you are suffering from this, I wanted to give some advice: Don't Give Up. It might feel at times that the doctor is getting pissed off with you, or that they just want you to stop going back, but when it comes to your health, it is important to be tenacious. You have the right to demand more from your doctor, and you should. It took me 8 months to finally get a diagnosis (which is actually pretty swift for the condition) , and after about 5 of those I thought I must just be going mad and almost stopped going. But I am glad that I didn't because then it meant I couldn't sit there and worry about it being cancer or something similar.
It started with a sharp pain in my arms and legs and then gradually I started feeling dull pain all over my body. I went to the doctors and was scheduled for a blood test. The tests all came back negative (for things like diabetes and thyroid conditions) and this lead to the doctor essentially telling me it was in my head. She told me I was just depressed and then went on to ask me about my relationship with my parents, in a very patronising manner, as if all depression is, is daddy issues or whatever. I didn't go back to her. I then met with a more sympathetic doctor who ordered more blood tests and gave me some prescription painkillers in the meantime to help me cope. 4 blood tests later and they all came back negative, I was referred to the specialist at the practice, who diagnosed me with Fibro. He was very friendly and it was nice to have a diagnosis, but it all seemed to me like although I had a diagnosis, no one knew what the illness was, I was given a leaflet to read and that was that.
Treatment wise it's just a case of pain management at the minute and tablets to help me sleep, which can be depressing. I don't like to take the pain killers because I don't want to become dependent, so only take them when it's really bad, but that can lead to me feeling shit 24/7. But I am so glad to know that it wasn't in my head, and that I was right to keep going back and pestering the doctors.
Having to keep going back to the doctors for medication is a pain, but I have recently been put on a repeat prescription and provided there is no evidence of me abusing the painkillers I will be able to continue with this until I feel I need different treatment.
I wanted to say a huge thank you to all my family and close friends and to my partner (mushy) Joe, for putting up with me. When I have bad days I can be well and truly horrible, but having a support network is very important. I want to thank my friends for knowing I'm not a flake if I can't come out one night, and that if 3 nights in a row I say I need to stay in because I feel ill, believing me and not cutting me out.
I also want to say a big thank you to myself, for trying as hard as possible not to wallow in self pity and for still going to the gym, travelling around the country to see friends and for not letting this get in the way of enjoying myself too much.
One of the most important things I think if you are suffering similarly is not to use it as an excuse not to do things, I think these points can be related to a lot of chronic illnesses, and also to mental health issues. Remember that although at times it might feel like it your life isn't over, it's just one more challenge for you to overcome and you are allowed to be proud when you achieve something you thought you wouldn't be able to do that day, even if it's something as small as getting out of bed on a particularly bad day. Try to remain positive and know that there will be difficult days, but there will also be days where you feel almost normal. DO NOT feel bad for looking after yourself, even if it means cancelling plans, because when it comes down to it your health should always be the most important thing. Exercise. I know at times it will feel impossible, and it's a catch 22 that exercising is painful, but also beneficial at the same time. Go outside, don't sit around in your bedroom wishing you were someone else. Remember that it's OK to tell people you're not alright if you aren't, there's no sense in putting a brave face on it all the time, that's the kind of thing that leads to breakdowns. Appreciate everyone who sticks by you, this may be the time in your life where you find out who your friends really are, appreciate them more, appreciate your family and your relationships, because chances are they would take your place if they could, don't chastise them for being healthy etc. Always wear sunscreen.
Please don't leave unkind comments, I know that it sounds made up and I know people have it a lot worse, but this is more a post for people who are suffering with something similar, to tell them not to give up when it comes to doctors, your health is too important, and then those with a diagnosis to know that there are lots of us out here who understand. I dunno, this wasn't meant to be whiny and I hope it hasn't come across that way, but it's something I wanted to talk about and this seemed as good a place as any to do so.
Thanks for reading, I hope that if any of you are suffering health-wise that you feel better soon, or at least come to terms and peace with everything. For those of you who are good and healthy, don't take it for granted, your health at some point could be all you have. I realise I am not an authority on any of this, but yeah.
Love to you all - Hannah x
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