fibromyalgia

Fed Up. Afraid.

Fed up.

Frustrated.

In so much pain it is almost impossible to concentrate.

Disclaimer: If you don’t want to read what will probably be somewhat of a downer then I suggest you don’t read this and wait till the next time I post something! It’s just that, this is my blog, my space to write, and today I’m struggling so I think I just need somewhere to be able to vent.

When you have a chronic condition like mine, one with no cure, not even an exact treatment, one that even doctors don’t quite understand, it is difficult to explain it to other people. I mean who would want to sit and listen to what it’s like to no longer remember what life without some kind of pain was like? Who could be expected to able to understand that on one day my energy levels might be at 50% and I can actually leave the house and do something I enjoy but the next they might be close to zero and I can’t do much but lie in bed for absolutely no explainable reason? Who could actually be expected to be prepared to be there through all of the lows?

When I was in my first year of university I wrote a post on what it means to suffer from fibromyalgia. Things go up and down but nothing has changed, not really.

I have to admit that I’m afraid. I’m afraid of being taken seriously by people who can’t, and sometimes refuse to, understand. I’m afraid that going to see a doctor and expressing just how bad things can be will have them turn to the same old easy option of deciding that if I’m struggling I must be depressed because of course it couldn’t possibly be completely normal to struggle when your body feels like it has given up on you. I’m afraid that this is it, for the rest of my life. I’m afraid that many of my friends just don’t see what it really means so don’t really support me. And I think one of things I’m most afraid of right now, as I am single after so long, is that no man will ever be prepared to deal with this. How can I ever expect to meet someone and not frighten them away because they don’t want to face the side of me that isn’t all light and sunshine?

In life I can be cynical, my sense of humour can be rather dry and self-deprecating. But I am a positive, happy person. I believe in the power of the simple things. I believe that we should love freely, and as much as we can. I believe in making the most of what we have, and being grateful for everything we are given in life.

I want to live my own life as much as I can, I have goals, I put the energy I do have into projects and things which will make me happier. I give as much as I possibly have to the people that I care about, the people that I love. I just fear that sometimes, because no matter how I choose to live my fibromyalgia will always be a part of me, that I won’t be good enough. What if I’m not enough?

Sophie x

Shaken, Not Stirred.

Shake me and I rattle.

Yesterday morning I was off to the doctor’s to try to sort out my every worsening health. Of course, an appointment at 10.10am quickly became an appointment at 10.45, which was followed by a mad dash to the chemists to pick up new prescriptions before cycling at breakneck speed back to my house to pick my books up, and then whipping off to uni. By the end of the morning I was already shattered!

But it was actually an incredibly productive appointment. (Even if I did almost get a bit tearful.)

The result of this visit to the doctor’s is that I now feel a little like a cocktail of drugs.

Shake me and I rattle.

But although I’m not a huge fan of being on lots of medication,  it has gotten to that point where I just want to find something that works. It has been almost 7 years now since I first started experiencing pain. That is a long time in the lifetime of a 20-year old. It has been 7 years since I could walk around in the day and feel absolutely no pain, I honestly cannot remember what it feels like to not have, at best, a slight aching pain in the base of my spine. And it has been almost 3 years since I had a really good night’s sleep, since I woke up feeling like I had the energy to face the day.

So if this cocktail manages to dull the pain and gives me decent nights and smoother mornings, then sign me up forever!

Sophie x

Thoughts at 1.28am.

It’s 28 minutes past 1 in the morning.

Although my head hurts with the ache of tiredness there is no sleep to be had, my back throbs with too much intensity for my body to rest.

It’s times like this that I have to just admit defeat. Tomorrow morning will invariably be a write-off.

Such is life.

With endless reading to get through, piles of dissertation research on the go, a PGCE application in the process I guess it is really no surprise that I find myself here on a Friday night. My health is taking a turn for the worse. Again. I’m starting to wonder whether the cold weather that these months bring with them that is having the biggest impact on me. Or is it the amount of work and stress I am under at the moment. Or if it is being busy and living alone? I don’t have the answers.

My pain levels have spiked and I can’t pretend I am not concerned. So it is back to the doctor’s surgery. Maybe back to the hospital, who knows…

I’m not going to let it get the better of me though.

I have wonderful people in my life who will help me through. My lovely friends who text me to check whether I’m okay. My lovely friends who offer to get my shopping or who just pop round to check I’m okay. My lovely family who always have time for me.

You know you’ve got good friends when you have a lengthy Skype session and they don’t get tired of the fact that your brain is slow and sluggish and you probably weren’t very lucid (or interesting) to talk to!

So here we go again, it could be another long path. But I know I’m not alone, so thank you to everyone who looks out for me, thank you to everyone for being so understanding and caring, you mean the world to me :-)

Sophie x

The End of an Era?

So I mentioned last Sunday that things have changed for me when it comes to matters of my health. People who have read my blog for a while will know that for the last six years I have had to deal with various different problems – back pain, stiffness, extreme fatigue, dizziness, headaches, trouble standing and walking etc. To put it in a simple term, I have a condition called fibromyalgia. (If you want to read about it there are several posts in my Posts Worth a Read section.)

I have been going to the hospital, the doctors, and the physio for almost six years now and on Friday afternoon something happened. I was discharged from the hospital. 

Basically the doctors can do no more for me. There is no cure and I have tried the vast majority of the treatments available so for now, I’m on my own. It feels a little odd, I’ve been going to hospital for so long that it has become a part of my life (I’m aware that’s quite sad), I can’t imagine not going. But for now, unless my condition changes, I won’t be going back.

It’s not all bad though.

I am determined that if I am going to have to live with this condition, I am just going to live with it. I want to really LIVE. So in a way, no longer having to deal with all sorts of hospital appointments means that it will be easier for me to feel like I’m leading a normal life.

Being at university and living at home this year means that life is slightly on hold, or perhaps it’s just that it’s easier. I feel a little like I’m a bubble which is cushioning me from the difficulties of adult, working life. Next year I am moving out again to live with some lovely lovely people from uni and it will be a nice in between step to help me figure out how well I’m be able to cope with my condition on my own.

I don’t know what I want from life yet, I just know that I want to do something that makes me happy, surround myself with wonderful people, and carry on finding pleasure in the simple but beautiful things in life. Who knows where I’ll end up or what I’ll end up doing but for now, I just want to move forwards in my life.

Stay positive everyone!

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(I wanted to include this lovely image of spring as it has been horrible snowy weather here and I’m trying to pretend we have sunshine and blue skies! Is it snowing where you are?)

I hope you’ve all had a great weekend and enjoy the build up to Easter :-)

Sophie x

Weekly Workouts #3.

Hello lovely readers!

When this post goes up I shall be enjoying my penultimate day in Paris! I thought that as I am returning on the Tuesday I would still plan my week of workouts as it is one of my goals for July. I really enjoy having a set plan for my exercise as it helps me to stay motivated throughout the week and I always feel a sense of achievement if I manage to carry most of them out. However I also don’t beat myself up if it doesn’t quite go to plan – sometimes things pop up that result on things needing to be reorganised and that’s fine. When you’re battling with a conditional like fibro or CFS then you have to be prepared for days which basically end up being right-offs (like most of last week!). I think accepting this has really helped me to stay focused on the positive days.

No doubt the trip to Paris will leave me feeling pretty exhausted as we will be doing a lot of walking so I’m going to keep this week light and manageable. It would be great to actually succeed in completing every single workout I have planned!

Monday –  Lots and lots of walking around Paris!

Tuesday – 20 min stretch session

Wednesday – 30 Day Shred

Thursday – 30 min upper body workout + 2/3 mile cycle

Friday – 20 min stretch + ab work session

Saturday – Rest Day

Sunday – Rest Day

I know this plan looks quite heavy in the middle of the week compared to the weekend but this is because I may well be off to visit my grandparents that weekend where I can’t really workout so I’m just calling those rest days. I need to take some time off anyway at the moment as my strength is pretty poor.

Hopefully I’ll manage this week as I’ve only really planned three proper workouts, I think if I’m careful with myself then I should be fine!

I hope that you have all had a fantastic weekend, I can’t wait to get back and catch up with you all :-) In the next few days you can be sure to expect posts full of beautiful photos of Paris, I will definitely be sharing all of the wonderful things we did on our trip!

What’s your week of workouts looking like?
Do you schedule rest days? How do you deal with being inactive?

Big News.

Hey hey there :-)

So, as I promised you all yesterday, I’ve got some BIG news to tell you!

First, let me backtrack a little. As those of you who have been reading my blog for the past few months will know, this has been my first year at university. You will also probably know that it has been a difficult year at the best of times. Over the course of the year my condition has become far worse and I have really struggled to get through it all. Earlier this term, after lengthy discussions with my parents, my disability adviser, my English lit tutor and Tom, I made a difficult but important decision…

As of next year I will be transferring to a university closer to home.

This means that starting September I will be moving back home full-time and transferring to one of the local universities to continue my degree. I am still going to be studying English literature and I will still be going into my second year, just at a different institution. Although I made the decision a while ago, I wanted to wait till I’d been in to see the head of English at my new uni and received my official offer before revealing this to the world.

I’m not going to lie, it hasn’t been an easy decision. The lecturers and tutors at my current uni are fantastic and I’ll miss some of their lectures greatly, I’m sad to be leaving a campus and a city that I have really grown to love, and of course I’m really going to miss the brilliant friends I have made! I also have to say that I’m a little disappointed to lose to my independence. If someone had told me, this time last year, that this is how things were going to turn out I would have probably laughed, it is definitely not what I planned. But I really feel that it is the right decision to make – I have to prioritize my degree, and of course my health.

I want to take this opportunity to say thank you to all of you who have supported me through this year! Your kind words, your advice and your endless support has really really helped me get through this. You truly are an amazing bunch of people :-)

So I hope I now have your support with this change! It won’t be easy to begin with, but I am really optimistic that it will improve my life for the near future.

An Uphill Struggle – On Fibromyalgia.

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I have started several posts with the sentence ‘lately, I’ve been struggling’ and it’s often true.

In fact, I could quite easily start many more posts with that.

Because it’s true, I do struggle, I struggle an awful lot.

Over the past year I have had to really come to terms with the fact that I have a chronic condition and probably will have for the rest of my life.

Whether it is a chronic pain condition, a chronic fatigue syndrome, arthritis, or all of these, I HAVE A CHRONIC HEALTH CONDITION.

There, I’ve said it and it’s written in caps lock so there really is no denying it!

For the time being, we’re calling it fibromyalgia which sort of is a mixture of the three. It also sounds nice and official which makes a change after years of having to say ‘well… I have this back problem… the doctors don’t know what it is…’ which never got taken seriously.

So I thought I’d write an informative post about the condition, so that I get it all out there in the open. I have talked about my condition before, if you want to read them (I promise it’s not too depressing) here are the links: Living With Chronic Pain – Part 1, and Living With Chronic Pain – Part 2.

Recently I read this post from Mary’s blog Fibromy-Awesome. It really touched me. And I just felt I had to write this.

Why did I decide to write this post? Honestly, I absolutely promise that it is not because I need a rant, I’m writing this almost for the opposite reason. Firstly many people have asked me questions about my condition and I’ve never really explained the symptoms I have, secondly I feel like I need to write this – it’s like catharsis, and thirdly I want to accept that my condition has gotten much much worse and then move on. Writing this is me saying, okay I have a condition and it sucks, but my life is about much more than that and I’m moving past it.

The NHS website defines fibromyalgia as such:

‘Fibromyalgia, also called fibromyalgia syndrome, is a long-term condition that causes pain all over the body. 

The name fibromyalgia comes from three Latin words:

  • ‘fibro’ meaning fibrous tissues, such as tendons (tissue that connects muscles to bones) and ligaments (tissue that connects bones to bones)
  • ‘my’ meaning muscles
  • ‘algia’ meaning pain

However, the pain of fibromyalgia does not just affect the muscles, ligaments and tendons, but is felt all over the body. It results in widespread pain and extreme tiredness. People with fibromyalgia may also have:

  • difficulty sleeping
  • headaches
  • irritable bowel syndrome (IBS)
  • muscle stiffness’
What does it all mean in terms of my life? Well here are some of the main symptoms I (and thousands like me) have to contend with every single day:

Pain

Ah my old friend pain. Here is a sad fact about my life, it actually almost makes me cry to think about it, I honestly don’t remember what it feels like to feel no pain. For me, this was the first part of my condition that I experienced. Essentially, I have been in constant pain for the last 3 years and experienced pain everyday for 2 and a half years before that. I wake up in pain and most days this just grows as it goes on. I go to bed in pain. So far, none of the pain killers, anti-inflammatory drugs, etc that I have been given have worked. I have learnt to deal with the pain and if I’m honest I think I will be in pain for the rest of my life. Pain seems to be something the body, or at least my body, can’t adapt to. I can’t ignore it, I can’t get used to it, it never goes away. I feel the pain most acutely in my hips, lower back, upper back, shoulders and neck: I have sharp stabbing, shooting pain up my spine throughout the day. My knees, ankles, arms, wrists and hands are, so far, less affected. The whole of my body constantly aches, many days I struggle to walk much, I can’t stand for any length of time at all, sitting upright causes my back huge amounts of pain and even lying down is no longer comfortable…

Fatigue

This is a newer factor for me, I’ve only really had problems with fatigue for the last year or so, and it’s only become serious since starting university. I struggle to sleep but I am on medication for that which does actually manage to knock me out for the night. But when I wake up, which is really difficult with the drugs (you win some, you lose some), I feel as though I haven’t slept. Most days I can gather up enough energy to go about my daily life, some days I actually feel pretty good and manage to live more normally, but some days I crash. I feel completely drained and exhausted, even lifting my arm feels like excruciating effort and I stay in bed for the entire day. This usually leaves me feeling completely weak, I am unsteady on my feet and last term I even collapsed twice – half from the pain, half from the exhaustion. The fatigue often brings on headaches, I usually have 3 or 4 a week (my pain also causes headaches).

Extreme Sensitivity

This is a difficult one to judge because it’s hard to remember what I experienced 5 years ago and differentiate that from what I experience now to figure out what is caused by my condition. I have become much more sensitive to bright light (e.g. overhead lights, bright sunlight, etc), it hurts my eyes, makes me feel tired and gives me headaches. The same goes with loud(ish) noises. I also experience hyperalgesia which is when you are extremely sensitive to pain, banging my toe or elbow is extremely painful and causes my back to jar. I also get cold very easily and the cold causes my joints to be more painful than usual.

Stiffness

I am, as I already mentioned, extremely stiff in the morning when I wake up and this often carries into the day. It makes sitting in lectures or sitting at my desk extremely painful. The stiffness and pain also causes a lot of tension in my muscles which in turn occasionally causes them to spasm which is where they contract tightly. Sometimes when this happens my knees buckle and I stumble, it’s difficult not to fall over. Lately I have also found that my hands spasm pretty painfully when I am writing by hand or typing. If I’m honest, this particularly worries me.

Cognitive Disturbance

This has in a way been the hardest symptom to deal with. Don’t get me wrong, the pain and the fatigue are awful to deal with, they have taken so much of my life. But this has really really affected my work and that is not easy to deal with, either at Sixth Form or at university. When things are particularly difficult I have trouble remembering even the simplest of facts, I have difficulties concentrating, I get dizzy and struggle with balance, my eye sight blurs slightly and my head spins pretty badly. The strength of my medication really doesn’t help with these issues. These cognitive disturbances get referred to as ‘fibro-fog’ (somewhat patronizing in my opinion) and they make reading difficult which I really hate, they also make working and revising very complicated and sometimes impossible tasks. Combined with my inability to sit at my desk too long from the pain and the exhaustion the fatigue brings, doing my work at university has been incredibly difficult and organisation is hard to keep on top of. I used to be the sort of person who did her work the day it was assigned, was super organised and had everything ‘just so’, as such this has been really difficult and hurtful to deal with.


I really don’t want this post to be just about me, and I certainly am not looking for any sympathy. What I want is to raise awareness about conditions like mine, these so-called ‘hidden illnesses’.

The other day I took the lift to go up two floors in Waterstones. I didn’t have my cane as I was with my mum and I could lean on her arm if I needed. As we got to the second floor there was a couple with a toddler in a pushchair waiting for the lift. My mum went past but then as I went past the guy exclaimed, in that loudly obnoxious voice people use when they’re feeling self-righteous, something like “Oh yeah, because you’re disabled!” and then proceeded to complain to the woman with him. Now to be honest, on that day I was really struggling so, unless one of them had a condition like mine, it would have actually been easier for them to carry the pushchair between them (it’s not like they’re very heavy!) down the two flights of stairs than it would have been for me to climb them. So although I wasn’t particularly upset by the experience, I was a little irritated. What if I had been a cancer sufferer going through chemo, or an AIDS patient, or a cystic fibrosis sufferer, a sufferer of clinical depression, or anything ‘hidden’ like that?

It’s just plain ignorance to act like that and it really made me think that we really shouldn’t judge people, you never know what they are going through behind closed doors.

Anyway, I really hope you have taken something from this post. It took a lot of energy and emotion to write and I feel pretty drained now. But actually, I am proud of myself for pushing through this, I am proud of myself for not giving up, I am proud of myself for what I have achieved.

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Tomorrow is my birthday (yay!) and I promise I will be back with a slightly easier to read and more uplifting post!

Did you learn something from this post?
What are your thoughts on ‘hidden illnesses’?
If you would like to, I’d love for you to share something ‘hidden’ that you struggle with!