I Just Want To Feel OK Today.

Be OK

I’ve been living with Chronic Fatigue Syndrome and Fibromyalgia for a couple of months now.

Well, no. I’ve been living with them for anywhere up to 9 years, but for 8 years and 10 months, I didn’t know what it was.

It all started when I was hit by a man driving a stolen car in 2004. I was just 25 years old. I didn’t break any bones, so the Dr’s sent me home quickly enough from the hospital, and my GP ignored my requests for help when I couldn’t move a muscle without searing agony for weeks afterwards. He said it would be internal bruising. He told me to wait it out. He told me to stop coming to see him so much. And then, when I finally managed to get scans months later, I was told they’d been wrong, and I needed an operation on my shoulder. And one on my knee. Oh, and I had severe whiplash too, which they’d missed. Wow.

Every time I was seen by my shoulder specialist, the hospital cancelled my knee appointment, because their system couldn’t cope with me seeing two Consultants in the same department. So it took 2 years of torture before they finally completed both surgeries. And in the meantime I had regular injections and procedures on my back and neck, physio and every holistic treatment I could find.

When the operations were finally finished, I thought I’d start to feel better. Not overnight, I’m not silly, but with more physio, I thought the pain would subside. It didn’t. And I kept returning to Doctors, and being referred to specialists, and seeing new consultants and therapists and being passed from hospital to clinic to surgeon and back again. Nothing worked. And my record became littered with comments from these “experts”, saying my pain was disproportionate to my injuries and I should be healed now. And I cried as I begged people to stop dismissing my complaints, stop insinuating it was psychosomatic and help me. And they shook their heads and said there was nothing they could see on scans and that I would just have to live with it.

And I learnt to. I learnt to live in constant pain and forgot how it was to not have spasm in my shoulder blades, a stiff, aching neck, sore back, sore arms, sore knees. I “pulled myself together” as the medical experts advised and even got myself back to work. Despite me doing what they said, it wasn’t going away and I was hurting, bad, and getting more and more exhausted. I couldn’t sleep as I couldn’t get comfortable, I’d catch every bug around and then be wiped out for weeks, meaning my sickness record was terrible  I couldn’t recover from illness as well as others and couldn’t understand why. Every trip to my GP was the same – a raised eyebrow and a look through my records and instructions to “get myself back out there”.

The years from 2004-2009 were hell. I dealt with depression as well as the pain, borne from the frustration of no-one listening to me. I knew there was something wrong. I know my body. I could tell that it wasn’t in my mind, that I was becoming physically more and more exhausted. But I kept trying, and lived a normal life as much as I could – even though normal to me meant going out on a Friday after work and then not being able to lift myself out of bed until Sunday night. Not from a hangover – but through pain and severe exhaustion.

From 2008 to 2011 I tried to hold down many jobs. They started fine, but my body could not cope with the routine and would give up, meaning too many sick days for most. In 2011 I started working with Steve at CloudNine, who had infinite patience and could see I was trying, but gradually my health deteriorated and I had to cut my already low hours. We discovered I was one of the 40,000 or so women who had PIP implants, and unluckily one of the ones with a full rupture and silicone leaking throughout my body. By the time we found this out I could hardly walk and was in so much pain it hurt to touch my skin – but again we thought this would be fixed once the PIPs were removed and replaced.

No.

It got worse until I was bedridden, suffering from physical and mental exhaustion, anxiety attacks and pain so extreme that I came close to giving up. After all these years, I finally thought I couldn’t fight anymore. Sensing my despair, one very kind and helpful Doctor referred me to the Rheumatology department at The Royal Free Hospital, who diagnosed me after lots of tests and a few months observation and finally, after almost exactly 9 years, gave this thing a name.

There is no cure for what I have, but there are ways to manage the symptoms and techniques for coping with the strain. My daily dose of 400mg of Tramadol often doesn’t even soften the pain, and the sleeping tablets and other medications that are supposed to knock me out rarely allow me more than one hour of unbroken sleep a night. I’m living in a highly wired state of drugs, sleeplessness and pain that makes me volatile and skittish on occasion, but most of the time, I think I’m managing it OK.

And you know what? Simply knowing what it’s called has made such a huge difference. Getting the diagnosis after so long, knowing that I wasn’t making this up, that I hadn’t gone mad, and understanding that I have two very real, recognised conditions, has taken that self-doubt away from me and allowed me to start making positive plans to help myself for the first time in years. I knew there was something wrong all along. I’m just sad that no-one would listen, and no-one thought to associate my symptoms with these illnesses before – especially when they’re both so common after a physical trauma.

It’s great to feel a spark of positivity again, even if it is muffled on days like today, when I wake up exhausted and can’t move my arms or legs for hours, and can’t even roll over to get my pain killers because every bone and joint is on fire and I have no strength left to try.

But I’ve always been a fighter, and now I finally feel that I have something real to battle against – rather than aimlessly punching a shadow. At last I can plan a strategy, know what I can do to make myself stronger, learn which moves will work, and which won’t. I’m keeping my mind busy as much as I’m able, as although it’s hard to focus, I don’t feel so useless if I’m learning. I’m eating better, I’m taking more supplements, I’m pacing my movements and I’m trying to get as much rest as I can. I am completing baby steps towards “the big plan”, which will help to make life easier for other people who may not have the resources and/or support I’m lucky enough to have, and I’m concentrating on the things and the people I love, rather than wasting my time on the negatives.

Being chronically ill is not fun. There are a lot of changes that need to be made, to your lifestyle, your relationships, your whole world. But I’m learning that if you appreciate what you have, rather than worrying about what you don’t; allow yourself time to be sad, but not wallow; accept the changes rather than fighting them and research ways to help yourself with more than just medicine, it gets a little easier. One of the hardest things of all is coming to terms with the fact that those good couple of days you have, where you feel you are conquering this thing – they won’t last. But luckily, neither will the days when you’re sobbing and broken and can’t lift your head off the pillow.

Good follows bad follow good.

I do wonder what it would be like to live with no pain. I often wish thing were different. I dream of being able to leave the house whenever I want, without help or the fear of sleeping in the street or not being to make it up the stairs. I sometimes think that I just can’t take anymore. But then I remember how far I’ve come and how much I can still offer, and somehow, I make it to the end of that day. And then start a new one, that may turn out to be be better, or worse, but will pass, just like the one before.

I’ve stopped trying to conquer the world in one go. Now, it’s all about the little things. On a bad day, it may be getting from the bed to the sofa on my own, or allowing myself to open up and ask for help, which I hate. On a  good day, that may be catching up with and laughing with my friends, or getting out of the house to get to the cinema with my man. Baby-steps. Tiny, achievable goals.

In a way, it’s made life beautifully simple again. I don’t have time to care about the nonsense, the drama, the silly things. I just have to concentrate on being OK today, one day at a time.

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  • Thanks for posting such a brave and honest post Jen. People don’t know how it is to be chronically ill and in pain and you describe it so well. Sending love and hugs, your onesie and tea pal xxxx

  • Thanks darling. I also understand how hard it is for those around us – who can’t always read our minds and dont know how to help. I talk about it to vent my frustrations, remind myself its not all over and also to let other people know they’re not alone…as these illnesses can make you so incredibly lonely. Preaching to the converted, I know. X

  • Sorry you had to go so long without a diagnosis … i too felt better when i knew what it was. Interestingly, i too have links to the Royal Free as both my children were born there. And you’re right it is about finding the little things. Good luck and wishing you better days soon!

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