Another day. New tests and challenges. New battles.
More and more as the days go on here I believe the phrase, ‘only you can save yourself.’
I put my faith and hope - YET again in the people who are supposed to care and aid you in your recovery to getting better.
Unfortunately, that has not been the case.
I am lucky, so lucky to have had a number of people fighting to come and see me whilst I have been staying here. Despite it being quite a distance from home. Having that support everyday has made me try to be positive for them and it’s made my day seeing them. Gives you normality in an alien environment and it lifts you up, reminding you that people do care and love you dearly. Many of the other patients don’t have any visitors from day to day. Maybe because many are here long term but it still must be very difficult for them to deal with that fact and the loneliness.
My nurse has finally begun doing some research on Lyme and has come to me today saying she didn’t realise how clever the Lyme bacteria are and how debilitating the intolerances it can cause were. Changing itself to cause the body to fight itself and products, foods, chemicals it comes into contact with.
As you know.. my symptoms are getting awful now.
A lot of our time in here includes being round other patients and nurses. So to keep up that brave, positive and talkactive face is hard. Beyond hard. The others sulk around and feed their their misery.
I can’t be doing it! It’s hard enough keeping my own head above water I don’t need extra bricks on my feet! This massive chunk of the day being around people though truly does tire me out. By 10pm I am done. As well as being up most of the night and up at 6am, by 10pm I want my night meds and my own space.
My symptoms are also becoming harder tolerate.
- chest pain
- air hunger
- blurry vision
- upset stomach
- joint pain
- burning like hell burning
- swollen throat and lumps
It’s awful. My oxygen levels have gone from 98/99 to 78-80’s/99.
They still can’t understand why my temperature shoots up at night, and why it’s so low ( not normal ) in the morning. But it’s because by the night time I have had some many things my body doesn’t know what to do with that it panics and my immune system begins to attack them. Causing fever like symptoms and a high temperature for me.
My blood pressure has risen from Thursday’s 78 thank goodness to 95-105 but due to physicals being done after meals I am normally busy worrying with the added symptoms and coping with them.
My ECG are having to be kept to daily along with bloods because of my symptoms. Normally they would have decreased the frequency by now.
Being only able to have one pain relief tablet every blue moon and 3 histamines in a 24 hour period also worries you that you aren’t able to get any relief from anywhere. When you are testing foods at Breakspear I normally have 3 histamine shots to calm me down in one go... not three spread out over 24 hours and aggravating the symptoms more by carrying on with the problem foods.
I have no choice here though. Don’t get me wrong I am loving the sandwiches BREAD you all know is my ultimate weakness and peanut butter reminds me of home with my PB2 powder there.
But the milk, yoghurt and cheese are upsetting my stomach, head make my ache and affect my nose the most.
Wheat and gluten seems to make me air hungry and like I can only get half a breath,
and so is affecting my chest the most.
Oil affecting my throat and causing brain fog.
I had a serious dairy overload all before 2pm and I felt totally naff this morning, I did all I could to distract myself. I tried to focus on my Christmas cards. Doing the family cards for Christmas to remind me of what a good Christmas we must have this year! We have been truly tested this year and we really don’t know how long we have got on this Earth, or being around the ones we love. So we must cherish them and enjoy them to the full. More than ever, all I want is to be around my family and my close friends making memorable memories we will forever cherish.
I want to finish on a touching note.
I have been overwhelmed and brought to tears by the beautiful direct messages over Instagram from people who have read and follow my blog. You were brave enough to share your own heart breaking stories with me and along with your kind words- this means the ABSOLUTE world to me! If I am helping people then I can rest in peace. You are ALL warriors and we are all creating an amazing story everyday in our own way!
We must also celebrate hitting 800 followers on Instagram! Let’s aim to hit 1,000 before the end of the year! So we can have a real big celebration!
Keep spreading the love, positive vibes and beautiful, true stories !
We can make a difference and you are never alone.
Thank you for reading.