Many chronic illnesses are not recognised under the NHS because they are complex and testing along with treatments are EXPENSIVE they don't want to deal with that so fob you off. Diagnosing you with something easier to treat and something they believe will get you out of their hair.
Just yesterday I receive a letter from my GP asking me to go in and see them because it's come to their attention that my symptoms will affect my driving and must reframe from driving.
I was fuming - for years now, I have explained how I have struggled driving and they have ignored me. Now that they haven't been able to get me categorised as crazy they are now trying to target something else.
In reality I am not stupid. I know how I am feeling and haven't driven properly in months and years. My Mum drives me everywhere now and luckily friends and family are helpful and always offer lifts or work around me transport wise.
Chronic illness effects your whole life.
You hardly sleep, you struggle with daily tasks, travelling takes so much more effort and planning, your medication bag is bigger than your clothes bag, everything is and has to be planned, support is needed and necessary and it makes life 1000 x harder than normal.
People spend years going undiagnosed and suffer in silence. Believing they are in fact crazy.
You are not crazy.
You are a warrior.
This is why the suicide rate for chronic illness is so high.
1 in 10 people who suffer from a chronic illness;
Parkinson's, diabetes, heart disease, Lyme and so on.
Take their own lives and commit suicide.
It is so hard finding the right treatment.
With Lyme you have to remember it is tough to diagnose and I understand the NHS don't have the equipment at times to test for these more complex diseases but to completely ignore them is not acceptable. Every Lyme warrior is different. None of us are the same. Again making it extremely difficult to diagnose.
With Lyme - you are bitten by a tick. Now that tick has travelled miles, feeding off all sorts and infecting itself with lots of diseases. Which when it bites you - they kindly pass on to you.
Which is why.. YES I am infected with the Borreila bacteria ( the Lyme bacteria ).
I am also infected with herpes 1,2&6 and Epstein-Barr along with the dangerous Coxsackie virus.
Along with finding out how many things co-infections have infected your body on top of the Lyme it is daunting finding out how dangerous these diseases are.
Epstein-Barr is glandular fever 🤒 and when it has been in your body a while without being recognised or treated it will change your cells in dangerous ways. It targets your B cells and can then become cancerous. Causing Lymphoma cancer ( blood cancer ).
Coxsackie virus this virus has two strains, which I have both A and B. Strain A causes muscle injury, paralysis and can cause death. When infected you can come down with a fever, throat, mouth blisters. Strain B attacks your major organs, with strain B you will suffer with headaches and abdominal pain.
Coxsackie can easily kill. Once it takes host in your heart it begins blocking the flow of oxygen in your arteries that feed your heart the oxygen it needs to survive. That is why it is so important to fight these viruses and make them dormant. To stop more damage being done.
A hard pill to swallow is that once your have gotten the virus under control and dormat it does not mean it will be dormatforever. It is still a host within your body and although dormat and not reproducing. Contracting another virus or your immune system becoming weakened can cause re-activation of the virus then you are fighting to 'put it back to sleep' again.
That's why re-testing on foods, materials and chemicals is SO important to keep your immune system as healthy as it can be and remove an extra stress that causes it to panic and struggle.
It's all so complex and so difficult to explain.
I also have 3 strains of the Borrelia bacteria.
B7 & B16 strains are normally picked up within the Europe & North American countries.
Where as the B20 strain steams from Japan.
What makes this bacteria so dangerous?
The spirochaete, the spiral make up of the bacteria means that they work like a corkscrew and drill themselves into your tissues, cells and MAJOR organs. This is also why it is very risky having your own children and being the one to hold the baby. As it is very easy for the bacteria to cockscrew its well through and into the placenta. This not only means that infections are passed on to the baby from the Mother but the bacteria can begin causing great damage. Causing your baby to be born with neurological problem, paralysis, heart problems, brain problems, joint problems etc. Nobody would want their unborn or new born to face a life of the hell they themselves go through and the extra cost on the family for health care as well would be a huge strain.
This is why so many children are born with health defects and tests are run on both Mother and baby to find they both suffer from Lyme.
This is why we must fight for more awareness!!
We need more and easier test.
Along with more research for treatments.
Finally I am suffering from Herpes 1,2 & 6. They are a family of infections that unfortunately reoccur.
Herpes 1 & 2 are among the same family of infections as the chickenpox & shingles.
Herpes 6 is a DNA infection within the Betaherpesvirinae subfamily of the genus Roseolovirus. Herpes 6 is shown as present in most patients with neuroinflammorty disease such as MS.
Untreated can cause bone marrow suppression and pneumonitis - lung inflammation.
As you can see all the above sound nasty and unpleasant.
All are very damaging in their own ways. This is why we are so hard to diagnose and treat. We all suffer from different co-infections, or immune systems are at different strengths and we suffer different symptoms.
Common symptoms that can easily relate to other diseases, viruses and conditions;
- headaches / migraines
- abdominal pain
- muscle & joint pain
-aches and pains
- memory loss
-re-occurring sore throat
And many more.
The symptoms above may not seem serious or sereve but it's not a case of just suffering from one of the symptoms above, we suffer from most of the symptoms if not all of them plus more.
If you think having a hangover headache is bad enough and keeps you in bed all day - then how do you think we feel waking up every morning with that hangover headache feeling, then on top of that aching joints, nausea, stomach pains, unable to remember what day it is, what you are doing, weakness, aching ALL over. To have to get up, get dressed, smile and struggle through the day. We can't lay in bed all day. There is only a certain time you can categorise your pain as 'a bug' or 'feeling a bit under the weather' and spend a few days to rest up and get better. Chronic spoonies don't after 48 hours wake up and are back on top form like normal people.
it's our life!
We can't spend all day in bed or rest up.
We have to have to live through the pain, struggle through the days and accept our conditions ( which is SO hard to do.)
So please - if you know someone who suffers from chronic disease & illness. The 'how are you?' Is our nightmare question. We never want to seem negative or look like we are always suffering something nor are we wanting sympathy and attention! We don't want to address the pain. We hate it being a part of our lives and we hate giving it the time of day when it has taken us so much to be stood, holding ourselves together in front of you. We refuse to let it take our lives. So please just be more aware and acknowledge the effort and strength it has taken us.
You have so much to deal with being a chronic illness ( Spoonie ) suffer.
You are fighting a number of viruses that are trying to destroy you from the inside and that you have the pain on top ( emotional and physical).
Then we are fighting through our days. Doing the best we can.
That's what we have to do and tell ourselves to do.
I am so guilty of taking so much for granted before being unwell and a spoonie. Food, holidays, family, friends, outings, getting dressed and more.
Now all these things are either inaccessible to me or 1000x harder to take on.
I write everyday - 3 things I am most grateful for.
Before becoming unwell my teenage self would problaby have written things along the lines off;
My early 20s self would have written
-cake at Light ash
-veggie pizza at Italian Orchard
- a coffee with family
- my house where I still live and run alone
- a phone call with a bestie
Back then a crazier day would be better swimming training, a cinema trip, bowling and a meal out.
A crazy day now is a trip to the shops and a sit outside in the sun ( maybe at home or maybe at the pub ) having a drink.
Life has a weird way of testing us we have to make the best of it.
I was always so stubborn about having to have my brave face on ALL of the time. Now I am realising it isn't a weakness not to paint that smile on. Yes people would question why I didn't look well or ok. I haven't been ok for a long time. Does that make me weak? No. Does battling through everyday, taking my medications and going through a tough treatments make me weak just because maybe I can't smile that day? No it shows strength. Like all spoonies. We have more strength inside us than most.
For so long I have felt weak and never wanted to show weakness.
Now I am learning and accepting that I am allowed to rest, needing an extra hand is ok not a weakness ( wheelchairs, a hand with house chores etc ). It's more a strength accepting the help than a weakness battling on and pushing ourselves until we crash and do further damage.
I am taking note of the run down, injured 🤕 state my body is currently in.
I am not a superhero with a magic wand that can wish away my pain.
And despite of the reality that currently I am not in control of my body - my lovely 'siblings' of virus are. I must stay as in control as I can. Listen and respond to my body. If I feel tired, rest. If I am aching, rest and take some pain relief to take some of the weight off yourself, feeling weak and fatigued, get a taxi, use the wheelchair or re-think tasks for the day, if I react to food whether I LOVE it or not maybe we have to give it a miss etc.
Life is a lesson.
Test after test.
Knowledge is power -
We must educate ourselves so we have more of an understanding, can process and help ourselves in our life's journey & challeneges.
Did I ask for a chronic illness or wish for one? Would I EVER! Did I ever do wrong to deserve this? I can proudly say that everyday I set out to be the best person & version of myself I can be. I have never been a bad person.
You see the evidence for yourself at Breakspear - they are all the most beautiful people, inside and out. Truly inspiration people who have successful businesses, worked abroad and have huge dreams and goals. It's inspiring to see despite the horrible and daunting situtation they find themselves in they can still smile and be positive.
We should never never blame ourselves.
We didn't wish for this to happen to us or for us to suffer this way everyday.
I am sorry for today's post being a long-winded one. Though I hope you have learnt, understand a little more and most importantly quite enjoyed this post.
This is my life - the spoonie life.
A spoon and proud.
Turning every negative into a positive the best way we can.
Reach out if you are also a spoon and are struggling with life, tasks, relationships or/and health.
Most importantly - keep rocking being a spoon, you are killin' it.
Always here for you all.
Love and peace
Feeling sluggish and rubbish when you have woken up? Get boosting up on bananas the more the better - they will help settle your stomach, boosting digestion, they are a mood enhancer, they will give you the energy you need and keep you full. Buy my book for banana receipe ideas.
Wake up every morning and ATLEAST have one glass of lemon water before doing anything else! Ideally try to drink a litre of water. The lemon wakes up your digestive system ready for the day and has great cleansing properties.
Check your dairy and meat intake - dairy can sit in your system for up to seven days unable to digest properly. Meaning other foods also get neglected and nurtients aren't absorbed properly and you feel extremely bloated. Go and smell your food bin, your stomach will be in that state. Rotting foods in your belly - hmm nice.
DO NOT FEAR CARBS - THEY ARE NOT THE ENEMY! CARB UP!!
Bananas, Rice, Potatoes, Leafy Greens, Corn, Beans, Lentils etc PACK THEM IN GO MAD.
NEVER COUNT CALORIES - NEVER RESTRICT!! These restriction 'starvation' diets who tell you to only eat 500 calories a day then have a treat day - where you binge out and eat WAY too much, is simply messing up your metabolism and on your binge days yours body stores all the fat meaning you gain weight because it knows it is going to go back into starvation mode and needs to hold onto every little thing it can. HELLO WEIGHT GAIN.
Life is too short not to live it to the full, making yourself happy.