'When you are going through hell, keep going!' - Churchill
Day 2.
After a rough night - lack of sleep, irritable - couldn't watch TV programmes or focus, feeling like I am going to be sick every five minutes. I was really dreading another day today.
Through all this you realise how awful the disease is along with the tasking treatments. None of it is straight forward. You feel different everyday and react differently to treatments on different days.
At first you think you are the crazy one. Mainly because you have been told this for many years. Though when you sit in the dining room eating lunch amongst other sufferers you begin to understand we all go through the hardships of this disease. In lots of different ways too! Which is why treatment is so tasking and is different for everyone.
You hear the sad stories of people going years undiagnosed, fobbed off and losing massive chunks of their lives to this disease.
Spending months and months in and out of hospitals , going abroad for tests and treatments.
It's so difficult to explain the true suffering this disease causes. This is why so many at Breakspear do a lot of their own work to spread awareness. As nobody wishes this hell on anyone!
This morning I had a slow start - I was lacking motivation ( which I hate ). Once at Breakspear I tried to pull myself together, doing some colouring, talking and trying to smile - laugh.
Those as always the day was tasking.
I was struggling to concentrate on my colouring and even though I am currently testing my tolerances to foods I thought I tolerated reasonably it appears my body isn't always happy still with the foods I feed it with currently. Despite not having serious effects to them, they still aren't fully settling with my body. And the whole point of this is to reduce as many symptoms as possible and be able to eat a wider range of products. Oil - rapeseed oil. Which was their nearest oil type to coconut that they had was many highest intolerance score and gave me the worst reactions out of the products tested today.
Pineapple and I love pineapple also didn't sit well with me. I became very sensitive to light, brainfogged and my arm where the needle had placed the substance had swollen.
Who would have thought that would have occurred.
Rice and cashews - two of my faves were luckily on the lower end of the intolerances scale. Though after my heightened reaction to oil, I was only given a small dose of cashew.
Once 3 hours of vaccine testing was done we were on to 4 hours of infusions. Luckily we quickly found a vein after applying heat.
Then it's not pleasant. I had to eat lunch already feeling off and sick then on top the infusions wipe you out and have their effects. I feel very sick, achy and my stomach ache is really unpleasant right now.
It does upset me a little and I get emotional. As knowing you have 4 hours to get through and the pain & sick feeling l not really subsiding through this time.
Lying there unable to concentrate on anything leaves you lying staring at a blank wall whilst feeling rubbish. I thank goodness finished earlier today and have been able to get back and take the time to think about my blog. Though the prospect of moving right now is daunting - I feel very sensitive to light, movement, feel awfully sick and have the pain worst stomach ache.
I just have to look forward to seeing my Godmother later this evening. Though the prospect of feeling & looking as I do is not sitting well with me. She remembers the fun, care-free Sophie from a decade ago.
Though after struggling through my days I didn't want to leave it and go later in the week when I could possibly feel more exhausted.
I am sure I will be simply so overjoyed to see her and all my worries will fade.
So that's Day 2 done and dusted..
It's shocking me how I am not bothered about going and getting out after treatment either - normally I can't wait for going out to dinner and drinks. But I am so exhausted, feeling so sick and in pain. It seems a big task! Though I know my soul needs it to stay sane and motivated.
Lots more to come! I am hoping my exhaustation will allow me to sleep over the heightened pain.
It's all part of the game.
Love and peace all,
S
Xoxo