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June 23, 2011

I have really become to accept things lately, “acceptance” was a word that I seemed to have deliberately removed from my vocabulary. I thought accepting would mean giving in, but it turns out that it just means dealing with it, coping, understanding that the good will always follow the bad.

I now do things that may cause pain, but i know that I will get over the pain and forget it, all that will remain is the enjoyment. Like playing the guitar – its taken me the best part of 2 weeks to fight the pain and manage to play a complete song; afterwards my arm felt numb for a few hours and the joints in my fingers were stiff with pain. But it went away and i just remember how good it felt to be playing again. I also tried singing the other day but nearly passed out and then spent the next two hours in agony – it felt like my lungs were being wrung out – but again, the pain passed. Along with meeting fantastic new people, that have to deal with the same debilitating illness, I have gained support from their words and advice and I am definitely feeling so much more mentally positive!

On another note, I went back to see my GP on Monday, we discussed that London have given me the 8-10month estimate – to which he replied “wow”, and we then went on to discuss types of medication.

I think he was quite surprised that the medications were ones that he already knew about and we discussed in length how they may help.

After another BP reading, he responded with “Take it steady Liam, today we are in the dizzy depths of 100 over 60”. But for me, that was a good day…

The beta blockers are doing a pretty good job with my heart rate – providing I take things steady. However, the major downside is that they leave me with low blood pressure – which causes the constant dizziness that ultimately leaves me feeling unsafe. When the weather gets hot, my BP drops further, and then I have the wonderfully horrible pressure in my head and the muscle spasm seizures.

I stressed my concerns about the summer, but apart from keeping the penguins company for the next few months – I can’t avoid the warm weather.

My GP has agreed that he will prescribe me anything that London may suggest in the interim, so I have written to Prof Mathias to ask him what he recommends my GP does while I’m waiting. If there was a ship sinking due to a crack in the hull, obviously the best possible place to fix it would be a dry dock, but at the end of the day – you still need to patch it up so that it actually makes it to the dock! I dont think its too much to ask, and hopefully the Prof will give something to sort my BP.

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