Living takes its toll.
There seems to be so much going on, I don’t have time to sit back and when I do I am just taken over by pain. So it doesn’t feel like resting but fighting just to be.
It’s heartbreaking when the most joyful times are the times you have to take care with and suffer for.
I found it hard to get myself together last week and go out for my birthday.
I didn’t want to feel more poorly and because I was so depressed about how I was feeling it was almost as if I wanted to prelong my birthday coming around. Hoping I would feel better.
Though I’m glad I did go out, despite not feeling well at the time and losing part of the night with my mind going blank. I enjoyed the evening and had an even better party night.
Even running up to my party I am normally so excited, so prepared, outfit sorted and all set ready for a fun time. This time I haven’t thought my outfit through beforehand, I had to go home and rest instead of prepare things and I struggled ( yet I didn’t show it ) to keep up my socialising and last the full time.
Although I am suffering for it now I don’t regret it!!
I don’t get much of a life and it was important to me to have my loved ones all in one room.
People complain at having flu and colds.. there immune system may have dipped slightly.
I have put myself in the firing line - eating everything I shouldn’t, the cold weather and doing too much ( but in my eyes still not as much as a normal person.) Now my white blood cell count has dropped from 3.3 with the full moon to 2.6 , my neutrophils are dangerously low at 1.25, they were 1.8 last week at the bottom end of normal which is 1.6, my monocytes the white blood cells that fight infection in the blood are 1.3 which has again have dropped further despite being below normal last week.
My red blood cell count is just normal and my platet count has dropped below normal again! The red blood cells work with the Platlet and are responsible for carrying oxygen to the cells.
My weight also dropped slightly but as you can see I’ve been tasking it and my immune system is feeling threatened.
Everyone tells me I look well and it’s kind of them to say but I can’t explain the horrible symptoms I am experiencing and as you can see the Lyme is more than ever trying to attack anything it can to survive.
I eat more carbs and things my body sees as toxins ( crisps, oil’ed nuts and more ) the Lyme takes the glucose & sends the immune system to attack the ‘toxins’. It’s hard too, when the full moon does come around or I begin to crave more of the sugars and carbs.
I was watching the film Unrest on Netflix last night. I would have loved to have gone to the premiere in Birmingham or London back in August but my health as always & busy schedules meant this wasn’t possible.
It’s a film following the lives of sufferers with Chronic Fatigue Syndrome and the struggles they face.
It showed how sufferers many previously had and still did have active Epstein Barr and Coxsackie viruses. I unfortunately have both. It showed how sufferers have crashes - mega crashes and times when they are fine.
This is because the viruses have taught the body to not use gluscose correctly. We consume the glucose and the cell is able to store some glucose but the rest goes to the virus. We don’t have any reserves. Normal body’s will store the glucose in the cells which can be transported via the blood to the muscles when required. That is why we eat our yummy carbs and sugary snacks, are perky for a short time then suddenly flop. Our body no longer stores glucose as any it gets goes straight to the aid and reproduction of the virus and bacteria.
I said after Xmas despite like above eating high carb foods I was more drained than ever. Not only was I feeding my nasties, I was overwhelming my immune system with extra work & my liver!!
My temperature was hitting and averaging around 35 in previous weeks but last week it dropped dramatically to 32.4! A core tempature between 32-35 is seen as hyperthermia.
In the past few days despite eating foods that cause my immune system to fight my temperature increases to around 35.4 but is spending a lot of its time around 33.5.
If I ate challeneging foods previously it would increase from 34.5 to 35.9-36.
With glucose being restricted, and the Lyme & viruses trying their hardest to stop my protein bonding with oxygen to repair cells they have damaged they are having to find other ways to keep reproducing.
My professor told me to get my own indoor sauna to sweat out the toxins. The bacteria can’t thrive in hot temperatures! Like you do in hot heat, you feel drained and exhausted. You don’t want to move and often fall alseep on the sunbed. This is what the bacteria do with heat. They begin to fall asleep and don’t reproduce.
The full moon affects us because the temperature dips slightly, the tide & gravity levels are just perfect for reproduction. So in general that’s why sufferers have a low body temperature for the bacteria. Now mine has dropped further as it tries to find other ways to survive.
This affecting me a lot.
My head pain has been awful, my crawling has got worse, my spine is stiff, my rashes on my legs are getting worse, my chest is tight, I get lung and rib pain, my joints, burning and now leg pain.
Today my legs are aching, aching like crazy.
What the hell is going on?
People say you look better so why don’t you feel it.
Maybe that’s why I have been feeling so weak recently- my body is not only working on the outside but the inside and I dread to think about the war zone my body must be becoming is a thought I’d rather not think about.
The people from the film spoke of leaving in isolation, being bedridden and in some countries many were sectioned and taken away from their families - deemed crazy! They spent years away from their loved ones, only to return years later when they could no longer be accused of being crazy because the health professional couldn’t get them better. Those years their family’s have missed with their loved one. It’s heartbreaking.
I am lucky I am still able to live around and amongst my loved ones.
For that I am truly grateful.
I just get too excited and wrapped in the moment sometimes that why can’t I eat and be like everyone else. Not realising the true danger I put myself in.
And having to accept I can’t risk going outside or being around poorly people because I am a high risk to catch anything. Even if I do desperately want to go out or see my loved ones. Anything that may not be serious in nature but to me on top of everything else could well be.
With my joint pain increasing I have had X-rays on my hands.
I found it hard to even tie mask ribbons on Friday night and now if I hold something I have to look if I have grabbed it because I am not always sure if I have grabbed it.
Arthritis causes inflammation and of course can affect the overall white blood cell count and neutrophils as the immune system detects the inflammation and sends an army out to attack.
Hopefully the X-rays will be able to tell us more. Lyme is known to cause arthritis but I really am praying at 24 I am not developing arthritis.
With my right side first being affected and now my left side starting- I am a little worried.
My throat has been very sore ( the oils ) and my chest & lung pains have been concerning me. The Breakspear girls told me to get tested for the Strep virus. A co-infection to Epstein Barr that causes kindney problems, joint pain and throat problems. It is easy to treat with antibiotics but if left can cause kidney problems and heart palpitations.
At the moment I feel like my body is hating me more than ever. I was doing so well changing my diet and now I’ve sent the bacteria from all my viruses into panic, triggering my body to panic - unsure what the hell its attacking.
I will have to watch my neutrophils as if it drops below 1.0 then that’s a sign of neutropenia.
the days of our lives.
This is why my mood is so up and down. How much pain is bareable and how much fighting is acceptable.
Where is the break.. at times I just want to cut parts of my body off and you pray for sleep because you can’t stand much more.
The sun always rises though and the smile has to come out, the talk to look normal has to be spoken and the pain must be disguised.
I am trying to simply live as much as I can.. and try inspire myself as well as others. Helping all on the way.
Leaving footprints to be proud of even if they weren’t by walking my orginal planned path.
They tell you to create a life that makes you happy ..
what they don’t teach you is how to deal with suffering for trying to complete this goal.
All I keep replaying in my mind are two quotes.. one that Diana quoted and one from the movie Forrest Gump.
‘Between right and wrong, there is a garden - I’ll meet you there.’ Because there is no right or wrong way to this game. Sure I could sit in a dark room and not cause my body any extra work but not live. Or live, create memories and fight for a small glimpse of happiness. I vote for the latter. It may be wrong. I want to myself look back on my life and see many adventures, character building and memories. Either way we will suffer with loss, sadness, pain, happiness and laughter. That doesn’t mean I want to be reckless but I was put on this Earth for a reason I shouldn’t be ungrateful enough to waste the limited time we have!
‘Life is like a box of chocolates, you never know what you are going to get.’
Life never goes to plan, but you have to taste the bad ones to learn what does work, you didn’t like and what brings you sadness and also what works, brings you happiness and brings pleasure.
Life is never straight forward.
I don’t promote the way I live, or how I deal with my illness.
I am no professional. God I make a billion and one mistakes and have sometimes set myself back. But I learn as much as I can and fight bloody hard. Everyday is a new battle. Waking up all alone out in no mans land, no idea which direction to run in. As you are so unsure of which side is the enemy and which side is home. And even then history shows evidence that even friends turn their backs on friends and stab them in the back. As my immune system does to me.. attacks me.
In the end I fight as hard as I can and live as much as I can.
It may not be working 60 hour weeks and running a marathon but my God it feels like it!