Finding Home Comforts. Doctors. Poetry. Working Through Everyday.
Picture: I radiate with colour and beauty, with flames that burn within, despite the parasites that attack me and cause me pain, explain? I can't begin. I wear red because I am a little dangerous and a mystery waiting to be solved. My story through my eyes will be told.
Back at home - it's nice to be back to home comforts.
However adjusting to being home hasn't been as smooth as I thought it was going to be. Extra pain and tiredness is causes some issues.
Also issues with the GP and having to make appointments when you just need a few days to recharge and for a moment not have to think about hospitals and doctors. It has been quite full on.
As I discussed last week I was greatly annoyed and let down by the response I was getting from the NHS and local doctors. Since returning home they have been on at me to let them help. I still stand by my beliefs and feelings that I feel far more looked after & my health a priority being treated through Breakspear.
My doctor still doesn't believe Breakspear is the right route to go down, slating their tests and outlook on treatments. Not forgetting that they are don't believe my Lyme results and would therefore not treat my Lyme.
Yet I know BBC radio 2 did a piece yesterday highlighting the fact the NHS only accept 'accute Lyme' not 'chronic' . I see this is most probably because Lyme is a nightmare to diagnosis with it being made up and masked by co-infections and on top treatment, let alone on-going, life long treatment is expensive. Way too draining for the already strained NHS.
My family and I ( as always ) have been giving them a doctors a chance. I have undergone bloods ( which prior to Breakspear treatment - showed a few red flags and an inflamed liver ), the bloods that were taken just yesterday showed them to be a lot better and my liver also to be fine.
But their treatments are pointless, a waste of money, a waste of time ?
Why would patients be travelling from Germany, France, Italy and America every three months to receive on going treatment by Breakspear if they weren't benefiting from their treatment. Plus the level of treatment & knowledge of staff is outstanding!!
The local doctor's ignorance makes me feel sick to my stomach.
They are are insisting I have bloods every week ( which is fine - that doesn't bother me ) and to go and see someone from the NHS for my nutrition.
This would still be private yet I still have to wait 1-2 weeks for a consultation. Yet just yesterday I was an urgent case. And last week they were telling me to come straight home from Breakspear, but don't worry it's ok to leave me another week or so, what's another week after a decade - eh?
Breakspear, they dealt with me on the day with treatment for the week, a consultation the next day and now after 24 hours have written up plan of action, sending out samples too! These should arrive tomorrow or Thursday.
It frustrates the hell out of me that the local doctors want me to give up that kind of urgent care ( which they STATE I need ) at a hospital who specialise in food intolerances for their services who have dismissed me for a decade? I have been with Breakspear for 2 months am receiving 3 different possibly 4 different treatment approaches. Med's are sent that day, blood kits that day, infusions booked instantly - no messing. No waiting for months, and months. And if my major organs like my liver are improving then why, why would I want to give that up!!! After years!
Yet!!! The doctors still had a negative to say about the nutrition approach Breakspear are offering. Frankly, we are getting proof that what Breakspear are doing is helping in some ways and any improvement after so long is better than being dismissed and left!!!
No matter how long, slow, or extra travelling! After suffering for so long, these important improvements mean so much!!!
Anyway - as always we have agreed to the consultation that the doctor recommended and will be as open minded as possible as well as undergoing what Breakspear send through.
What else is upsetting me is not being able to feel relaxed and settled.
I love my house and my own space, however I am exhausted and want an extra hand from time to time. But I enjoy my colouring for mindfulness, cooking slowly, baths and TV. Along with my bed!!
After having a rough first night at home though I did agree to go back to Mama's. Making her very happy. I was so grateful for all the effort she was making, helping me cook, making the bed more comfortable, getting me a large supply of pillows and helping in any way she could. ( Thanks Mama! I am most grateful ). At first I was relieved to be able to chill abit more in the sense of washing up etc. Though a longer distance to the toilet in the night when I was feeling sick, a harder bed with an aching body and my arms to weak to keep lifting myself up and rearranging my pillows, itching to the point I had to change as my clothes were making it worse meant it was a restless night and has made me want to try back in my own home and my own bed. As today I have just been trying to function with such an aching body and feeling really sick trying to cope with the pain . I also missed a little being responsible for myself.
People who don't have chronic pain or chronic illnesses don't understand the second by second struggle not only to get through the day with the pains but making what to many are the simpliest decisions!!!
You are always caught in the middle with pros and cons on each side ( making decision making 100 x worse and making you feel crazier. )
We will see how tonight goes and take tomorrow as a new day. However I am upset I can't settle and find some comfort. To finish if I was crazy, insane & making my conditions up well I wouldn't have the daily struggle of working through all the different symptoms you experience day to day ..
Headaches and aches are the invisible pain but rashes - sorry guys I don't have a magic wand to make them appear because I fancied a rash and itchy skin ( doctors would probably argue this ).
And also this is an example why I have take each day as it comes. One hour I can be ok the next I may be struggling. I appreciate all my friends and family who on a daily basis work with me on plans, cancelling, meet ups etc.
Thank you !
Luckily I have the best family working around all the trials and appreciating the difficulties the best we can.
Any activities or comforts you recommend I try!?
I am open to any thoughts and advice.
I hope you are all having a good start to your week and are keeping your heads turned towards the sun ☀️ whilst the weather tries to rain ☔️ on us.
This fight of mine,
I can't deny,
Leaves me feeling anything but fine,
Many nights I do cry,
Though me I won't let it define,
I will always get up a try,
Can take over me,
Please understand that some days need to be filled with tears,
An invisible pain people can't see,
Eating away at me for so many years,
Praying for the day when I will finally be free,
I can smile at you,
That doesn't mean the pain is less today,
I hope you can understand that I really do,
I am fighting away the tears to keep it at bay,
If my body you could see through,
Maybe you would understand the dizzy state in which I sway,
You may listen one day,
I don't hold out hope you will remember tomorrow,
That I am fighting a new day,
We experience the laughs and the sorrow,
Keep the positive vibes flowing my way,
Who knows what's in store tomorrow,
Aches and pains,
Busy or calm,
When it likes to rain - it rains,
For answers I look to my palm,
My life line invisible and strength I continue to gain,
Are you my lucky charm?
Wounds and scars lie deeper than the skin,
Cuts that bleed,
I won't let you win,
I soak up any pleasures left in life with greed,
The fight is just about to begin,
One day I pray I will be freed,
That wash you up and knock you down,
The dark caves,
That want to bring you gloom and make your life a shade of brown,
Myself I will save,
Rising higher than the skyscrapers in this town,
Don't count me out just yet,
Exhausted and tired doesn't take my fight,
My inner strength I can't forget,
The goal in sight,
On my failure you probably have bet,
Though I see the light,
The journey is set,
Follow the stars - so bright,
Through the day and through the night.
We all experience tougher days over others. Let's just keep going.
Know your loved ones are always there and always reach out. True friends & family will never, ever judge!
Crying, breaking down, asking for help or cancelling arrangements aren't weaknesses.
Love and peace my beautiful souls.