pain

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

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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

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? 

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!

On Relaxing.

Well I’m home 🙂

It feels great. I still feel sick, I still feel exhausted, I’m still in pain. But I don’t have to worry so much.

I can read my beautiful book…

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I can eat delicious food…

I can play with my cat…

And I can relax with my family…

I hope you are all having a wonderful weekend and I will be back with more words for you soon, when I am a little more awake and alive! 😉

A Beauty Review.

I’m sorry for my general absence from the blogworld the past couple of days, I’ve really been feeling ill, in fact, ill doesn’t really begin to cover it. I dragged myself out of bed at 9am yesterday, despite of having gone to bed not feeling great the night before, because it’s one of my favourite lectures of the week but felt exhausted the moment I woke up. Honestly, on mornings like (I estimate about three days a week now) it feels like I was never asleep at all. My head pounds, my eyes droop and my whole body feels like lead. I may as well have spent the whole night ill, crying and drunk for how I feel when I wake up! Not fun.

So anyway, got back from my lecture at about 10.30am and promptly got back into bed and spent the whole day there. I just didn’t have the energy to move, I lived mostly off cereal and a couple of large flapjacks (which left me feeling guilty but lets not even go there today) and then obviously found it difficult to sleep later because I hadn’t done much… Then this morning I woke up still feeling as though the energy had been drained from me so I gave my first lecture a miss knowing that I’d still have another three hours of seminars and lectures to go and I’d never make it through all four.

I HATE missing stuff, seriously I think the only two days of school I missed the year before were when I had a horrific fever. I was the sort of person who went into school if I had a cold and a splitting headache and I never ever skipped any lessons. It’s not even that I feel particularly guilty if I miss, I just don’t like missing out on the lesson – getting the information later is nowhere near as good as being taught it plus when you miss a day you have so much to catch up!

Anyway, as today still hasn’t been great and I’ve not really felt like taking photos I thought I’d share with you something that I have fallen in love with lately.

No7 Beautiful Skin Day Cream for Dry/Very dry skin – £12.50

Lately my skin has been awful compared with usual, particularly in terms of dryness. Now usually I have pretty good skin, I have no acne, never have bad breakouts and only ever get the occasionally spot. However it has always had a tendency to be a little dry in the winter months and lately I’ve been getting all of these little dry patches mainly across my cheeks and between my eyebrows. It’s been really irritating me because no matter how much I’ve been moisturising within an hour they reappear as stubborn as ever! So I’ve been looking for a new moisturiser, something a little more ‘heavy duty’ so to speak, and I had a £5 off No7 voucher and I thought I’d try their new range and this seemed perfect.

Now I’d never normally go for something as expensive but with the voucher it was pretty reasonable and I’ve never tried using a day cream instead of just a moisturiser so I thought it was worth a shot.

Guys, I have seen the light. This is brilliant. Really it is, I rub it all in with a little extra on the dry patches and voila! My skin is silky smooth and the dry patches are gone for several hours. I’m really impressed with this, in a way I haven’t been with any new beauty products in a while. I’d love to try some of the other products in this range, especially the cleansing balm which I’m intrigued by, anyone ever used a balm?

They do two other versions of this: Normal/Dry skin and Normal/Oily skin so there should be something for everyone!

Pros: 

– Such a smooth, soft cream to use.
– Rubs into the skin well and doesn’t leave any whiteness.
– Smells lovely.
– Nice packaging.

Cons:

– The price.
– I feel for a cream of this quality it’s a shame it doesn’t have a higher SPF.

*Note: To all my lovely US readers I’m afraid Boots do not ship outside of the UK!*

 

I hope you are all having a fantastic week, almost the weekend 🙂

Do you have problems with your skin – dryness, redness, acne, etc?
What are your thoughts on No7?
Do you use a day cream? Or a night cream for that matter?
Have you found another fantastic moisturiser I should know about?


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!