The past few weeks have been rough to say the least. This is probably the longest I have gone without blogging for a while.
Luckily this week my bloods did look a bit healthier. After my disastrous week last week when my white blood cell count dropped to 2.6 I have managed thanks to upping my vitamin C & D complex tablets, doubling the dose. Which my professor advised and taking a probiotic in hope the infections and bacteria don’t hide in my digestive tract have helped my weight increase and my white blood cell count to go up to 3.4.
Before I had a busy weekend with the wedding and charity ball my white blood cell count was 3.8 normal levels being 4-11.
My neutrophil count has gone from 1.4 to then dropping to an awful 1.25 last week and improving to 1.65 this week. The normal levels are 1.6-2.0 so I am just in range. This means I am still too weak to re-start treatment.
My liver is just within normal range so my professor doesn’t want to put any extra pressure on my system at the moment as it is still trying to bounce back. He wants levels to improve further until we re-start.
Due to my health being forever tested and the colder weather coming in it is meaning that inpatient care to revitalise & strength my system and body in all senses is needed to be able to A) get through the winter season and B) hopefully get some form of life back.
I have had to cancel all social events in the last two weeks due to my health. I haven’t felt like leaving the house with feeling so rotten but also I can not put any extra pressure on my system.
As I explained in my previous blog I was given a pain killer, prescribed by my GP that reacted very badly with me.
It now seems that yes, I did feel like I was going to die as frankly they should never have prescribed them to me.
The pain killers are not supposed to be taken along with my other nerve pain medications. It causes serotonin syndrome; that causes a number of symptoms I experienced - itching, rashes, headaches, dizziness, nausea, sickness, stomach cramps, extremely low mood, blurred vision and sweating. Along with the possibility of sending you into a coma and even death.
It’s no wonder I was so unwell and despite taking them last Monday I spent almost all week in bed or lying on the sofa unable to move. Crying a lot with being unable to cope with the pain and the symptoms. With being so sick my Mum wanted me admitted, my body to weak to keep bouncing back & my soul numb with the pain.
So now it’s been a hellish week trying to find somewhere which will take me. They don’t want to deal with all my intolerances and they don’t understand my Lyme.
All hospitals up here and my doctors do not support the views of my professor or accept my Lyme tests as they were carried out aboard. So dismiss the main objective of needing a bed and their treatment.
I voiced my concerns to my professor who recommended hospitals and consultants in London whom are familiar in infectious diseases, chronic illness along with the intolerances and immune system issues that come along with them. Being closer to my professor too if I did have a problem, he would be able to help me or offer advice.
Whereas up here he is unable to help much, as my doctors dismiss him and his advice. I fear if I stay up here that we will have a repeat of last week’s hell of being so unwell with no proper research being done.
It’s a horrible situation to be in and it is pure torment - I can’t explain the effect it is having on my mood and I can’t sleep as I am so irritable.
Having to be taken away from home comforts when you already struggle to find comfort these days is deeply unsettling to me. Along with the fact of not knowing when or where I am going to end up. Each day is ever more stressful and hurtful.
Tomorrow we have an appointment at Preston to see what they can offer, if they can’t commit to working to catering for my needs ( gosh I sound like a diva! ) but you understand what I mean. I can not afford to get unwell, my immune system to be tested, to react to medications etc just because it doesn’t follow their normal programme. Unfortunately all us Lymie’s are unique. That’s why many don’t want to deal with us. Calling us crazy and mad as an easy way out for them. I am not being made to feel like I am nuts or treated that way. My soul is numb enough.
If we don’t feel comfortable tomorrow then London is my only option.
that will be the next stop on the treatment journey.
I hate being so far from friends, family, my home and I hate being confined to a bed surrounded by the same white walls.
This is truly upsetting to me and my soul is taking a hit.
I just hope I can make the journey down there. Luckily we can get the fast train with no stops so no running from platform, to platform with heavy bags.
It’s crushing me and I haven’t blogged in days as my depression has been extremely bad and it’s been super difficult motivating myself to do anything! I have also being feeling so sick that it zaps my energy and everything whether it is simple or more complex is a massive task. All this has left me regretting trying to be normal and live life. If I knew I would have all these affects it would have put me off massively.
I probably haven’t even explained very well and it may not even make much sense.
My mind is a jumble.
I felt it was time for an update and to inspire myself to write as my blogging does bring me so much enjoyment which right now I need in my life.
This has been truly, truly upsetting for me to type. I know you will all understand. Thank you for you on going support.
Thank you for reading,