Writing is a skill I enjoy and normally flows quite easily.. these days it gets harder to focus and really get down ‘to it.’
A lot has happened as always this week, time never stops and I am feeling wiped out.
The thought of still having to clear out my old home burdens me more everyday. The exhaustion and upset of having to go back and see, feel and sort through memories and materials.
Most I don’t have any love for anymore. I place the pans, pots and so forth in relation to the house 🏡 that I have tried to detach myself from.
I must vow to go soon and just get it all finished, so then the panic from my body can be removed.
It’s difficult - right now I feel deeply uneasy, life gets harder day by day. I try to fit in but never do. I panic about wasting time and living life but know full well I can’t keep up with the fast pace live my loved ones leave.
I try so hard to find purpose- l am literally, reaching out to everyone and anyone. Bombarding them with my story and asking for help. I only tell a snapshot of my own personal story because in the end I fight harder for others than myself. It’s future generations we must and have precious time to ensure we can protect them. You may have seen in the papers this week, The Daily Mail, The Sun, sharing stories of Lyme disease sufferers who are so frantically trying to raise money for treatments to keep them stable and alive.
I have seen friends and fellow paitents have ports placed into their hearts so they can carry on antibiotic & herbal treatments. How far can we let this disease go?
As I displayed in my last detailed post - the All-Party Government Group meeting on the 23rd of January, raised many important issues and I really do hope this is a signal of change in attitude towards Lyme.
Tick season is upon and I have spent literally all week contacting people, with ideas, asking for help and advise to try and ensure we have the resources and can raise as much awareness as possible and prevent as many as people as possible contracting the disease.
I have suffered with loss of weight in my years of ill health. The Daily Mail highlighted how deadly this symptom was. That is caused by the disease creating intolerances and allergies. The 25 year old weighs only 5 stone! It’s shocking and deeply upsetting. However it is so, so important for the media to really highlight the horrible symptoms this disease causes. As medical descriptions are vague and skim the surface. Real stories tell you the truth. These are what really make people listen and educates them.
As the woman explained she had written letters and said bye to her loved ones in case she passed. You may laugh and tell us to get a grip. I can’t explain to you how we really don’t know when we may not wake up. The pain, weakness, mind fog, joint pain, lung pain, tight chest, swollen throat, head pain and you really don’t know if this time whatever is reacting with you or attacking your body might just be too much for your body and it will give up.
You may call us drama queens and attention seekers but frankly the best answer to a fool is silence and I wouldn’t have anything to say to anyone who would come out with a statement like above when they have no idea about the situtation we find ourselves in.
It’s extremely easy to call us crazy and silly.. so very easy.
I challenge you to walk in my shoes! Would you even get up? I would vote no. You may laugh but I think if you did find yourself in my shoes I would have answered correctly.
On that front of what the hell have I been doing this week?
I just sit around and clock watch. Right?
Yes I have been seated, I haven’t been rushing around but my mind has.
In total this week I have sent 6 emails and 4 typed letters.
It may not seem a lot but when just one letter takes me 4 hours time soon flies.
I have spent my down time colouring and planning. Always planning.
I caught up with my Professor who as always had Mama and I in fits of giggles. I explained how my pain is unbearable and I wanted to cut my limbs off. He advised me not to cut my limbs off as I would be in far more pain and my brain would be extremely confused and add to the pain.
We spoke briefly about the option of antibiotic treatment but with my liver up and down constantly and just managing out the toxins currently we don’t want to overload it any further.
We did decide that daily sauna’s would help slow reproduction and allow me to sweat out the toxins to help aid my liver. We spoke about a possible new programme which would intitle focusing on vitamin D to strengthen the immune system. It is used in Japan currently and has been said to help paitents with over-active or suppressed immune systems, level their levels out so the body has just the right amount of strength to fight the baddies.
There are many pros and cons to this programme.
-It’s extremely expensive ( but so is every Lyme treatment ).
-It has many critics who have said openly on the website that it’s a ‘over priced con’, ‘anway to fleece desperate people.’ ‘for autoimmune disease it causes the body to further attack itself because it is so confused what is right and wrong due to the cells being changed by the disease.’
-Its all natural with no GMO but it does contain cornstarch that may react to me.
-My professor really rates it.
My Professor is extremely intelligent and highly rated within the medical circles not just in the country but worldwide.
He wouldn’t recommend something he didn’t believe would be useful to my condition.
My worry was that because the supplement is carbohydrate based it would interfere with my diet. However the amount we must take won’t effect my carbohydrate intake much at all. At first it shocked me I thought it would be half of my daily carbohydrate intake! I love my cereal, sweet potatoes and so on to not have them around!
After further research however it turned out the 35g I first thought I would have to consume was only 4g.
With my diet going so well and managing to roughly be 20g under on my carbohydrates now daily, 9g over on average for my protein, only 5g under on my fats, I have managed to get my diet far more balanced.
As my weight has improved my carb levels have risen and protein levels have dropped slightly. I must understand that although these apps are amazing they are created to fit around the average person ( which is not me). Keeping my protein levels higher and carbohydrates below the average is helping me so I will continue this way.
Of course last week , eariler on I was away from home comforts and carbohydrate levels were higher. Luckily when I got home on the Friday I have 4 days where I had 2 x 500G pots of Alpro a day which boosted my protein and made up for the ‘bad days’. This as always saved me, my weight was only 0.1kg down on the previous week. Without those four days though there was no doubt the result would have been a loss. My energy levels were so low. I didn’t even make it through the conference day. I slept all afternoon just to be able to handle the evening. It just goes to prove how you believe carbs are the energy source you need but you forget you don’t get to enjoy it and end up being severely fatigued and exposed to infections.
My professor was extremely pleased and proud with my weight progress and I think rather shocked. Which we like.
So we ended the call feeling that we were faced with big decisions that needed to be thought through but made quickly.
To risk trying a product not yet been tried and tested for my illness or sit and wait.
But wait for what? The day you don’t wake up?
My Dad was eager for me to do the trial not considering my diet & intolerance worries.
At first I was against the idea. It’s extremely expensive and I felt like it needed to be proven to feel comfortable paying the money required for the treatment.
Overnight however I had time to read, research and really think.
I should be honoured that my professor wants to work with me and consider me for this treatment. I was so lucky in the first place to get an appointment with him. That him mentioning it to me must mean he would like me to take part and truly believes will help me. Really it’s almost repaying him in some way. Helping him in his project as he has helped me in my Lyme journey.
I thought, what do I have to lose? I feel like I may drop at anytime most of the time anyway. I can handle any reactions thrown at me. I always find a way to fight through.
So it was decided, I would put my name forward. They may not decide to pick me for the trial, but I can still purchase the supplement- so there is no worry that this is my one and only chance to try it.
We will see what happens.
Life is a box of chocolates and heck do I have an odd bag, I may even be able to rival good old Forrest someday.
After my sauna today, my right eye is very blurry, I have been slow, my legs itch and my mind just really isn’t as sharp anymore. It upsets me more everyday. Just this post has wiped me out. I am pleased I have completed all my letters for the week, I just hope I receive some positive responses.
It’s been a busy one as always. I am thankful to have all of your support along the way.