• Sophie Ward

My Blood Is Boiling

Okay, so you all know I enjoyed two weeks in the hot, hot heat. I suffered a number of symptoms and everyday was a new challenge.

However, after weeks of trying to get my platelets up the sun had finally raised them to normal levels. For me my bloods seems stable.

This week it’s another story. Yet again, I’ve been suffering with a lot of different symptoms all very much unpredictable and unpleasant. I’ve tried to adapt and still live life as best as I can. But I can’t help but feel weak and I am struggling to function.

Not surprising with my bloods from this week.

My white blood cell count is the lowest it has ever been 2.4 and all my levels are really low, including once again my platelets.

At this point - it would have been a good exercise to have spent a month in Turkey or a country with a constant warm temperature of 25-28 degrees. To see how I coped. My body needs longer than two weeks to adapt and work with the climates and circumstances it finds itself in. Our unpredictable weather here in England and going from a roasting 40 degree heat to a cold air conditioned room in Turkey was also continuously shocking my system. It didn’t know what it was doing.

Now this was the first real time I’d been away and had my bloods monitored before and after to see the difference. It was also the fire chill holiday, not one sight seeing or touring around.

The rest did do me the world of good but my God, I’m struggling now.

I’ve questioned why it’s taking me so long to get back on it. I’m slow at replying to messages, it’s taking me longer to get through task and I am tiring faster.

My head pressure is truly awful and after waiting an additional eight weeks, in two weeks time I will be getting my 34 Botox injections. Which will hopefully help relieve some of the pain but I can’t explain or express how difficult it is to function and get through the day with such a painful, pressure filled head that wants to explode. Every movement and it pulses. It’s awful.

Everyday movement is getting harder, being ‘with it’ is more challenging and I do reach my wits end where by I don’t want to walk, talk, function.

Blog posts are even difficult but I try to write when I can because I want to be proof that we don’t allow our illness to take anymore away from us and that often writing when we are feeling most fragile is when we heal and bring comfort to so many.

It is proof that we are all human, not crazy and we aren’t alone in our struggles.

I know I laugh off a lot and act like I know what I am doing and what is going on but I can’t tell you how much just simply getting out of bed is taking it out of me at the moment.

Somehow, and looking back I don’t really know how I got through four nights at Lytham festival. I should be so proud of myself considering how I am feeling and all the battles going on in my body ( no wonder I am so drained). There is no rest bite in this game. I know I’ve said this before. My body is always attacking bacteria and itself that we can never fully recharge our batteries because despite being on charge it is always using energy.

I refuse to allow my health to get the better of me and this is exactly why I am writing this right now. My struggles will hopefully help people realise how difficult and complex life is for us. How trying to live really does set us back and we pay the price of enjoying what so many see as normal activities and fun.

I am lucky and I know that.. I am grateful for everything and everyone in my life but I wouldn’t wish this hell on anyone and that is why I campaign endlessly and do so much work to raise funds and awareness.

So what have I learnt from my holiday?

At first I thought the sun was the miracle fix to all my problems and when I spent most of the holiday in the shade and balancing horrible symptoms I questioned my first thought.

On returning, I’ve realised from my results that the sun may not be the miracle but in many respects it could be the key. Like everything though it’s finding the right balance. Too much sun and heat, causes my body to go into shock. Unable to deal with the bacteria dying off. Too cold and the bacteria thrive and reproduce like crazy.

A constant warm temperature will slow the bacteria. Therefore stabilising reproduction and therefore symptoms.

I’ve realised my body is weak, and that it does require time to adapt. It can’t just adapt over night.

In the end.. it’s not all about finding the miracle.

If we keep searching for a miracle we leave ourselves vulnerable to disappointment.

It’s about stabilising..

We will always battle symptoms and life will never be straight forward. But if we can we have to figure out how to live the best life possible often having to experience the lowest of lows but so great highs to learn what works for us.

They say chronic illness is a full time job, it really is!! In more ways than one.

You think you have it all worked out, paced correctly and the balance just so you can keep on top of everything. Like a whirlwind chronic illness knocks us off our feet and we are left scrambling for the pieces of the jigsaw puzzle to piece all the pieces back together to get SOME clearer picture as to what is going on in our body so we can treat and heal effectively. It then seems, that when we unlock one puzzle another arises.

For now.. I am beginning to learn what my body needs but it may not always be possible to achieve. We can only do our best.

Life is a constant lesson ( as we know ). Maybe.. in the future and when the time is right we will get a good constant warm climate here or abroad to really trial to understand further the relation with my health and the sun.

For now, today. It’s a time when we feel numb in more ways than one because the pain is so debilitating and simple tasks are 100000x more ‘tasking.’ We have to just work with the day and do as much as we can. In the best way possible. I HATE days like these. I am unable to do much, even concentrating on a TV programme is difficult. I am so irritable and restless because of the pain but too tired to focus on anything properly. Always learning.

The most painful and hard days are often the days we are most creative and our words so meaningful because we as sufferers are so filled with pain and emotion.

So even on the down days, don't neglect the things you enjoy doing; hobbies, creative outlets, social activities. More than ever you need them.





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