Disability

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.

Getting on with it.

Sometimes, when people find out I have a chronic condition, they ask endless questions (not that I mind) and often the response I get is “How do you deal with all of that? I think I’d just want to die!”

In many ways it’s not really a very helpful response although part of me is grateful to them for realising just how much it can be a struggle. However, I always answer in the same way.

You just have to suck it up and deal with it. 

Life won’t just sort itself out.

It’s down to you.

I know that sounds tough, and goodness knows it rarely feels that simple. But the fact is that millions of people deal with illness, injuries and disability everyday of their lives and if everyone went around complaining or just gave in, the world would be a sorry place.

I’m not going to lie, sometimes (especially recently) I just want to curl up into a ball and cry, I just want to give up, to take time away from everything, to slip into a state of numbness. But you can’t, that isn’t how life works. You have to be strong for other people, and for yourself.

You never know what is going to happen, sometimes life throws things at you which quite frankly suck. I should know ;-) What I’ve come to learn though, is it’s much less about what happens to you and much more about how you deal with it, it’s about not giving up.

Lately, I’ve not been feeling very well. You may have noticed that I’ve been fairly absent from the blogworld, I’m behind on writing posts and I haven’t been commenting on all of your fabulous blogs as often as usual. My energy levels have been incredibly low, it takes all of my effort to go into town for a few hours and I wake up in the morning feeling as tired as when I went to sleep in the first place.

Obviously feeling like this has in turn left me feeling quite down. It’s hard to stay positive when it feels like you’re struggling with everyday tasks and exams are approaching.

But I don’t want to let myself sink into a pool of negativity, when I start feeling down like this I know I have to pick myself back up because it would be so easy to end up feeling far worse by lack of productivity and distraction.

So I’m making the active decision to make myself better.

I’m clearly not talking about my actual physical issues here. Other than doing my physio everyday there isn’t much I can do there to improve things, I’ll leave that to the professionals. But I can do a lot to improve how I feel and to improve the way I deal with my condition.

Starting today I am going to do several things, each and everyday.

  1. Productivity. I am going to make sure I do something everyday, being productive makes me feel more positive.
  2. Activity. I am going to do something active everyday – whether it is just a little walk, a bike ride or a strength workout, doing something physical always helps my energy levels (as long as I don’t overdo it obviously!).
  3. Eat well. Pretty self-explanatory. I have been eating pretty well lately, a good balance of healthy and delicious which always helps me feel better.
  4. Read and write. Although I’ve been working a lot, I’ve actually managed to find the time to read for pleasure and it’s a great way of distracting myself when the pain becomes too much. I also bought myself a new moleskin journal and I want to start journaling again because I like using the time to reflect.

Hopefully these four little goals will help me build my positivity back up!

I also want to get back into blogging and everything this wonderful community involves again. I’ve missed it, despite just feeling a bit too rubbish and I’m going to make a big effort to post more :-)

When you feel down what do you do to bring yourself back up?
Any words of advice for me?

What are your plans for this coming weekend? 

Chocolate For Your Disappointment?

Well today has definitely been a busy day if nothing else. I wish I was coming back to this blog after the days I’ve been away with something happier so I’ll make the negativity brief and then move on to the chocolate ;-)

My decision to start writing about my pain, my condition was not easy. I knew I was opening myself up to all sorts of judgement. So far though, all of you wonderful bloggers and readers have been nothing but supportive and sympathetic to me. I don’t think I expected so much positive encouragement and I am so so grateful for it all.

There are some people however, who aren’t so sympathetic or more to the point empathetic.

Today I had an appointment with the rheumatologist and he essentially told me that he thinks my pain, fatigue and everything else comes from a mixture of my body’s imbalances from growing  and from my “depression”  which is due to the stress placed on young people in university, particularly prestigious institutions…

Well, firstly I haven’t grown since I was 13 years old. I.e. in 6 years. Don’t you think it’s taking my body rather a long time to sort itself out?

Secondly I am not depressed. I know what depression is, it is a serious mental illness, not to be treated lightly and not to be dismissed. But it is not what I have. I think that anyone who was experiencing what I have been going through for the past 5 years would feel a bit down occasionally. It’s hardly tea in the park! But I am not depressed, I am actually fundamentally an upbeat person who has been trying to make the most of frankly a pretty rubbish situation. So if I feel a little upset or frustrated I think that is a little understandable.

Anyway, can I just ask what makes a rheumatologist qualified to make that diagnosis? He essentially tried to typecast me into some mould - he asked me if I was feeling at all depressed, how my periods are and that I was looking quite thin so had I lost weight recently? I told him that I occasionally felt a bit low because it was tough to deal with, that my periods have been incredibly painful but regular ever since they started age 12 (sorry for the TMI) and that I had actually put on over half a stone since starting university thank you very much for asking.

So yes, as you can tell, not the best appointment and certainly not what I was hoping for. Chronic pain and fatigue problems are still an area of medicine which is not properly understood and there are plenty of medical professionals who feel sceptical about it all. Clearly he was one of them.

And no, thank you for offering but I will not be taking anti-depressants.

Anyway sorry about that rant! I think I just needed to get it all off my chest. I hope I haven’t irritated anyone by having this moan, I was just frustrated that he thought the best treatment would be “re-introducing me to gradual exercise” and a course of anti-depressants when clearly the first is sort of useless seeing how I have been exercising pretty regularly for the past 3 years and that I’m not depressed.

But I do have some positive things for you today so I will move on to those now. Much more fun!

After that fiasco my mum and I decided to go for coffee in town to cheer ourselves up. We tried a new little coffee shop with Scandinavian influences. It was pretty cute with magazines and books to read, pretty tiny too though.

It was nice to finally have some time to relax after an exhausting 3 days of singing and a tough term. I hope that I will be able to enjoy lots more relaxing time in town as it’s lovely in the spring and there’s so much to do.

I ate a very orange lunch today: tomato tart, roasted butternut squash, chopped carrot and a couple of sesame oat crackers. It might have been rather orange which is definitely not one of my favourite colours but it was pretty tasty!

This afternoon was spent working and then indulging on some more deliciousness:

Flourless chocolate cake (recipe from the Primrose Bakery book). It is so moreish and indulgent, seriously one of the best things I have eaten in a while. I baked it with my sister which was fun too as we haven’t had a good chat in a long time. Definitely good to catch up and hang out :-)

Plus it’s never bad when you have the gorgeous aroma of baking and chocolate filling the room!

Now it’s super late, I should have been in bed at least an hour ago so I shall leave you with a photo of dinner:

Chicken curry, basmati rice, cucumber raita and mango chutney – so good!

Have you ever been in that sort of position at the doctor’s?
Any advice as to what I should do?
Have you baked anything indulgent lately?

 

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!

A Lunch and a Reflection.

Hello my loves,

I hope you’re all having a great week so far!

Today is my day off. Every other week I have nothing on a Tuesday and it’s really blissful. Just the thought that I only have to get through another three days and then I can rest properly again gives me the strength to get through the week.

First, today’s positive happenings.

Look at my brand-new, shiny toy:

It’s not really a toy at all. It’s the most amazing chair I’ve ever sat in. It actually moves with you. If I lean forwards it comes with me, if I fancy leaning back a bit then I can just lean away. It has a little pump to fill part of the back-rest with air to support my lower back. Everything is adjustable. It’s wonderful.

Plus the colour is pretty cheering.

I didn’t realise it was going to be quite this bright but I kinda’ love it.

I really hope that it will help writing essays and researching online a bit easier.

Also lovely today was meeting with Natalie and Dan for lunch. These two are the cutest couple I know (after Tom and moi of course).

It was really nice to see the two of them again, it’s always nice to feel free to talk. Although I have some really fantastic friends here, I still feel more relaxed when I’m talking to people from home. People who know me outside of uni, away from the context of my condition, who know what I’m really like.

I bought a pot of pasta and tomato sauce from the canteen and, because I felt like I needed a treat, a skinny vanilla iced latte and a slice of banana bread. Indulgent yes, but delicious also. And we all need a bit of banana bread in our lives sometimes :-)

So this was all pleasant and relaxing.

Then came a chore I have a love/hate relationship with. Food shopping.

If I were a normal person I would absolutely love food shopping. I would love walking up and down the aisles of the supermarket, examining all of the different foods. I would love going into the local farm shop and having a chat with the fishmonger, picking out fresh herbs, buying locally made chutneys. I would love visiting the organic supermarket and gazing longingly at all of the wondrous health foods.

But. I had to take my cane because my knees have been playing up so I can’t push a trolley. Carrying a basket hurts. Bending down and reaching up hurts. Carrying the food in a bag on my shoulder hurts.

Luckily my lovely (I definitely overuse that word) friend Kathryn came with me so she helped where she could. But I can’t ask her to reach everything for me and she has her own food to carry.

Being disabled with any sort of outward visual sign exposes your fellow human beings. It separates the polite, the thoughtful, the caring, and the selfless, from the selfish, self-centred, and ignorant. You can tell a lot about people from the way they interact with the disabled or the elderly.

Honestly, sometimes after a hard trip out like this afternoon’s, part of me wants to give up on people. Especially when they walk towards you, chatting with their friend and neither makes any effort to move. Especially when people actually physically push past you. It really makes you feel like everyone is in their own bubble, self-centred, they’ll only help if it suits them or if it’s in their own interest. I have to work really hard to remember that not all people are like that. Many people are kindhearted. Many people do care. Many people do help.

And then, just one polite and thoughtful person will show you why it’s important to keep faith in people. A lovely, friendly looking man stopped, stood back and let me pass. Even though there probably would have been room for both of us. That’s all it takes.

I hope I was one of these people five years ago.

How do you feel about these sorts of issues?
What makes you lose faith in people?

When was the last time you treated yourself? Go on, you deserve it!