health

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

Four Simple Goals… Before 2014.

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So my condition seems to be continuing to get worse, my pain levels are heightened, I have sharp stabbing pain in the base of my spine, I usually wake up with a head ache, and my energy levels are pretty low. In an effort to think positively and try to enjoy life despite all of that I thought I’d write about my current goals.

I was reading Elanor’s blog blueeyedgirlstrikesback and came across a post which she wrote, inspired by a post from A Beautiful Mess.

The rules, created by Elsie, are as follows:

1. Choose simple goals that will make your life richer and happier on a daily basis. Choose things you may not otherwise get done but are not difficult to accomplish.

2. Do not choose result oriented goals. Choose activity oriented goals. For example, instead of “lose 10 pounds”, choose something like “eat fresh fruits and vegetables every day”. Get what I’m saying? Positive actions instead of just the end result!

3. Choose personal goals you believe will truly make your life richer just by doing them! They can be daily, weekly or one time experiences.

4. Choose a reward for each goal as it is accomplished! It can be a small or large reward—it’s up to you.

5. Blog about your goals, each one as you achieve it and a big post when they are all finished before the new year! 

It would be easy to make goals which relate to my work, but I have so many writing and research related goals this semester already and rule number one states that my goals should make me happier. Whilst finishing all of my uni work will of course be a positive thing, I’d argue it isn’t about making myself happier.

I definitely have a tendency to make myself target orientated goals, things which have a structured method to achieve them and a finite ending but I rarely set myself more abstract, action orientated goals so I enjoyed this challenge. It wasn’t easy to create goals which didn’t have a completely set aim but it was a refreshing change. Here are my four goals:

1. Listen to my body more. I love my food but sometimes I think this impairs my judgment of when I am actually hungry and when I am actually full whilst I am eating. My younger sister has always been very good at only eating when hungry and stopping the minute she is full and this is something I want to teach myself.

2. Sing. Music, but more specifically singing has always made me happy. I can escape into the melody and the lyrics, express myself through the song. Although I have never really enjoyed singing for an audience because of nerves I had singing lessons for years and just adored singing for myself. I haven’t been singing much recently and I want to allow myself to find my voice again without the pressure of exams and concerts. What better time of year to do this than now with Christmas carols just around the corner?

3. Take more photos. My wonderful camera has been sadly neglected recently and I want to get back into taking more photos of daily life. It’s coming to Rome with me this weekend and I’m sure the beauty of the city will inspire me again.

4. Stretch daily. I look after my body as much as I can, it’s the only real way I have of trying to combat my condition, but I have to admit I haven’t been making much of an effort to take the time to stretch out my body everyday. It’s relaxing to do so it fulfills two positive purposes.

In accordance with the rules I will blog about achieving my goals and think up some nice rewards for when I do!

Let me know if you set yourself any goals this year too and whether you prefer target or action orientated goals 🙂

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

Small Steps.

Ah life’s little ups and downs. You learn to take each day as it comes.

This weekend I was reminded of how rich my life is despite anything that may seem to be difficult or draining.

I have a wonderful partner who makes still makes me incredibly happy after almost five years. (Our five year anniversary is in just over a month!) I have the support of a fantastic family who always have time for each other in times of need and when the good times roll in. And I have some great friends, both old and new, there are some lovely people without whom my life wouldn’t be anywhere near as enjoyable.

Recently I’ve been on a slightly downwards sloped hill. My fatigue has been hitting me particularly badly and it just makes everything that little bit more difficult. I wake up every morning feeling sore and stiff and it takes me a couple of hours to feel fully able. It’s tough but I always take the time to stop and think: it could be so much worse.

And it really could.

There are so many people who have huge challenges to surmount in life, so many people who suffer, so many trials that are pushed on people completely outside of their control. I can’t imagine what it is like for those who truly suffer.

The other day a few people at uni commented how chirpy and positive and perky I always am and it made me realise how good I am at presenting the majority of the world with a happy front. It’s not really a facade, I am genuinely quite a happy, optimistic person. It’s more my way of keeping life going, of not giving in to my condition, of getting on with the world.

So I will continue smiling, continue saying hello to everyone I meet, continue enjoying the simple things in life and getting excited at the smallest positives, and just continue feeling lucky that I get to be the way I am.

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I hope you all had a brilliant start to the week!

Stay bright and chirpy for me 😉

Sophie x

Look Who’s Back!

Well hello there!

It’s been almost three weeks since I last blogged (what?!). That is by far the longest I’ve ever gone without posting and I’ve hardly been present online at all so I want to say sorry for neglecting everyone! I have really missed everybody and I’m definitely going to be catching up with all of you. Basically the short story is that I’ve been really ill recently. As in really ill. Each day, all of my energy was taken up by cycling to uni and going to lectures, the minute I got home I was straight back in bed. It’s been months since I’ve felt that extremity of exhaustion and to be honest it’s been tough. I didn’t feel like blogging because a) I had absolutely zero energy, b) I didn’t want to be super negative to you all, and c) I was doing next to nothing so I had nothing to write about!

But, after a slightly better week, and a really lovely weekend in London with Tom, I thought it was time to say hi again 🙂

I’m going to keep it simple, I figured I’d manage another instagram round-up of the past couple of weeks. As I said, I haven’t done an awful lot but I have managed to take a few pictures here and there. Last week I had a short assignment, it wasn’t a difficult piece but I really struggled to find enough hours when I didn’t feel like the dead walking so it took me longer than planned. Now I have to start all of my research for my four main essays this semester, wish me luck!

Autumn leaves | Stewed apples and homemade langue de chat | Raspberry and apple pie

Cycling from uni | Always reading | Autumnal fuchsias

Baking | Peanut butter cookies – so good! | Brioche from France 🙂

Pink metallic nails | Pasta bake comfort | I made a new veggie stir-fry

Gu chocolate fondant… oh my gosh! | More pastaaa | Fireside

Halloween pumpkin carving | Little Alice mouse | Isn’t she a beauty?

Poppy greetings | Chinese lanterns | Gorgeous chicken satay skewers

Tuna pastry | The perfect relaxing bath | New cookbook!

Sunday lunch | Apple crumble | New haircut

More stir-fry | Delicious blueberry and raspberry smoothie | Starbucks time – toffee nut latte

The best hot chocolate flavour = honeycomb! | Panini | Leftovers

So here’s a little catch up from me, now give me all of your news! I hope you’ve all had a lovely weekend and have a great week 🙂

What’s been happening in your life at the moment?
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Who’s starting to get excited for Christmas? (Me!!)