I caught a really bad virus that was going around at the time, and because I was already low, some would even say possibly depressed - everyone assumed I was just trying to stay away from school.
The virus was awful - like the worst flu you could imagine. I barely remember any of it.
I do remember being fobbed off at the doctors, my mum being accused of all sorts of outrageous things, and myself being treated like a truant when I was 'supposed to be over it by now'
I wasn't 'over it' I still felt awful, and it took years for a final diagnoses.
Because of the circumstances to which I fell unwell (stress, life changes, grieving, catching a virus and not getting better) I was diagnosed with M.E/CFS - as it's known to the NHS...
In my opinion, and many others, M.E is different from CFS
During hospital appointments I would always ask why my headaches were so bad. I was always told, ' That's tricky' and the questions I asked were evaded.
I knew my headaches and migraines were not M.E. so why were they treating them as such, why would no one listen to me?
Unkowing to me, this was the beginnings of every symptom shoved under the M.E umbrella obstacle that I would have to deal with now I have the diagnoses...
For 6 years I had a 24/7 headache with regular and very severe migraines that could last for days, some lasted for 3 weeks varying in symptoms, the 'death headache' as I refer it to, being the main symptom...
I was put on migraine preventatives, which did very little, if anything.
I was also put on melatonin to help my insomnia - although it helped somewhat, I wasn't keen on being put into a mini coma each night!
I hated being on tablets, I knew it wasn't the right way forward.
I had a very strange time when I was going to the rehabilitation program at Great Ormond st hospital.
One nurse was lovely, praising me for everything I did, yet the other nurse would come down on me like a tonne of bricks and make me feel emotionally shattered. It was a mentally traumatic time, and very, very confusing.
I was made to believe that walking aids and wheelchairs were a really bad thing to use in many ways. from uncool and embarrassing, to 'preventing me from improving'.
I now understand that all they were striving towards was to write positive things on my notes whilst I was under their treatment. To prove that their form of treatment was working - When it wasn't, in so many other ways.
7 years on, I would still rather stay indoors than use a walking stick. I'm not keen on the thought of using a mobility scooter, and I feel really negative about using a wheelchair - even though I know it would help in the long run, and wouldn't be using it all the time on a regular basis.
I was made to believe that my relapses were just psychological, and for a long period of time I kind of believed them - Not that it helped me gain more energy, or lessen my pain and symptoms...
Nothing they did at the time helped - because of my headaches were always so bad.
Nothing changed in my health until 2009 - when my partner took me to his chiropractor.
The chiropractor revealed something about my health which was very much physical.
My headaches, migraines, constant nausea, insomnia and some other symptoms were being caused by a trapped nerve in my neck and spine. My first spinal vertebrae looked as though it was nearly touching my skull! And my neck was very straight with no natural curve, which was another concern too.
Seeing a chiropractor is one of the best things I have ever done for my health.
After one adjustment, my insomnia had greatly improved. For the first night in 6 years I had slept without struggle without taking a sleeping pill, and I wasn't woken by an almighty headache with nausea.
After 10 or so adjustments my constant 24hr headache with nausea had been banished. The trapped nerve finally freed. I still have headaches, migraines and nausea, but the constant niggling dull versions from the trapped nerve are no more.
I felt like I had a new lease of life.
I had improved so much - I was discharged from GOSH, and I really believed that I was going to be 100% healthy by the time I was 21.
But sods law, something triggered a relapse.
I accidentally ate something that contained MSG (monosodium glutamate - E621)
It gave me one almighty migraine that knocked me down so bad I was using a wheelchair for outings again for at least a couple of months.
Although I have still improved, I've never reached that feeling of peak health I had experienced since that day...
A few years ago, I did manage to build up enough strength to exercise daily and have a few sessions at the gym. Which I really enjoyed, and miss dearly. (I was very athletic before I fell unwell)
I'm so glad I built some strength when I did - because I believe it has made the relapses I've had since then less severe.
But why are the relapses in my health still happening?
When I accidentally eat something I'm intolerant to, it can take over a year for my body to recover. My body has no mercy given to it.
My life seems to go in the pattern of 3 steps forward, 2.9 back.
At least I'm making 0.1 progress... But it feels at the time like I'm going backwards each time I relapse.
Isn't M.E just a form of depression?
I have been asked this so many times...
M.e really isn't a form of depression, however many people tell you this, it's simply not true.
However M.E is a really depressing illness to live with, so depression can often come as a secondary condition. Do you blame us?? We have so much pain and stress to deal with and we're already struggling.
I learn from each relapse - but each relapse is caused by different reasons.
To name the main factors...
Stress - Food - Chemicals - Overexertion
Stress can be anything. Even over excitement is stressful for a body that has a chronic illness.
Anything that triggers adrenaline is bad.
Chemicals can be from beauty cosmetics, cleaners, paints, new carpets, memory foam, new sofas, perfumes... To chemicals used in foods and health supplements (yes, health supplements!)
Bad reactions to foods that you're intolerant to can cause major setbacks towards recovery!
Overexertion is easily done when one has a chronic health condition.
From personal experience, I found myself running on adrenaline because I really wanted to do certain tasks, like meeting up with friends, or tidying up my home.
I would unknowingly overexert myself to the point where I would end up sleeping all day the next day without even realising!
If I wanted to go to the shops, meet with friends, etc... My body would start to surge with adrenaline to the point where I couldn't sit still, or start shaking.
A seriously unhealthy behaviour I'm trying to unteach my body right now.
The one frustrating thing with this is that I've had to slow right down. I barely do anything - yet some days I still fell like I'm doing too much because I can feel my body produce adrenaline.
Yes, my thyroid is normal as always... According to the nhs...
And despite slowing down, I still feel like crap.
There comes a point where you have to do the minimum.
The minimum is the easy part to work to out. Wake up at a certain time, shower (or skip that) dress, eat, chill, get ready for bed etc...
The tricky part is finding the maximum amount of allowed activity....
Because it's always bloody changing!
I really believe, that for myself at least, I must do the minimum activity.
It's what keeps me going, and I feel as though it's what keeps my strength up, preventing me from becoming bed bound again.
I never want to lose the strength and ability to do the very basics. I will try to wash and dress myself, however long it takes, and I will only ask for help if I really need it. If I have a migraine I usually just go to bed in my clothes, but I try to separate M.E from Migraines.
The ever changing mystery is my energy limit.
How can I be exercising daily one year, and the next be struggling to achieve the daily basics?
It drives me insane.
Right now over the past so many months, I feel like I have been enduring a relapse.
I have suffered financial stress from dealing with the DWP - frustration with lack of help from the NHS with my health - New food intolerances - and adrenaline from overexerting myself and further adrenaline production from the stress.
Seeing all those triggers on paper shocked me. I've been through a lot, and I'm now not so surprised that I've been dealing with a relapse to my health, because all these things really don't help!
But why is it happening? Average people don't suddenly drop half dead from stress... What's happening to me that's so different, and why?
I swear it's a much easier life being healthy. I've had so many people say to me that they wish that they could live on benefits...
One. Be VERY careful for what you wish for! Two - I would HAPPILY swap lives with you!!
The DWP make our lives a fucking misery.
Like we don't have enough to deal with already!
I wish I had the energy to have a job, because the DWP make you feel like utter shit - the type of shit that's on the bottom of your shoe!
TOTALLY WORTHLESS!!
I can't even begin to describe how crap they can make you feel...
I wouldn't wish anyone to live a life on benefits. It's bad enough feeling like shit daily, let alone being treated like it, accused to being a lying fraudster too lazy to go to work.
Sometimes I wonder if being on benefits make my health worse from all of the stress that they cause!
But without the money I can't buy the private healthcare I need, the supplements that I swear by, and the food I need so I can get all the nutrients I need from being on a very strict diet.
I can't hold down job. Believe me I've tried!
I lasted an hour. It took 4 days to recover from an hours work. So it's safe to say, I don't think I got the job, and it's very safe to say, I don't think anyone could live off of £5 a week...
Financial stress isn't healthy for anyone - it can make the perfectly healthy fall unwell.
I'm often told not to worry about it, but how can I not?
How can I not worry, when I know that my benefits could be cut at any moment, or even worse, be demanded back. Every. Single. Penny.
Imagine yourself in a similar situation. If you was working your fingers to the bone, yet knowing that your employer could accuse you of being lazy and not working hard enough and demand back all of the money that you got paid. Or your money could just stop, but you have to carry on working at the same place.
It sounds absurd, but that's pretty much what life is like living on benefits - insecure, emotionally traumatic... It's a living hell at times.
A lot of my friends have to have a medical interview every 3 to 6 months 'because their medical status might change'
I'm sorry, but what does
LONG TERM, CHRONIC HEALTH CONDITION MEAN TO YOU?????
FFFFFFUCK ALL!!!
Some of us have been unwell for well over 10 years and are not getting better, so what's going to change in 6 fucking months????
FFFFFUCKING FUCK ALL!!!!
Our health status will not change. We will not suddenly get better, and even if we did, why would we even want to stay on this fucking twisted benefit system!!!.
You would think that the benefit system is there as a safety net, for those who are in need of help, if you fall unwell, the government will proudly support the ones who need the help.
You are SOOOOO FUCKING WRONG!
It is not a sympathetic system AT ALL!
If you're genuinely unwell, don't expect them to believe you. Expect them to twist everything you tell them, expect them to accuse you of lying, and expect them to treat you like some kind of criminal.
It's the most demeaning experience you could ever endure...
And the longer you're unwell, the longer you have to live with it.
I'm not entirely sure who these people are who can happily lie their way through the system and happily live on benefits. They must be one hell of a person with no conscience, and obviously deserve a bloody oscar for outstanding acting, because people who are REALLY unwell like me, really REALLY struggle to get the financial help we need.
We are too unwell to fight for it most of the time! If it wasn't for my family dealing with my benefit claim, I would have no money at all.
I don't drink, I don't smoke, I don't eat junk food, I don't buy the latest technology, and I don't buy expensive clothes, so why is it that if someone finds out that I get financial help, they're suddenly jealous??
You know I think I've worked it out..
Because they are Ignorant, Narrow minded, Dumb, Bastards.
I could carry on writing about how emotionally stressful living on health benefits is, but I think that just about sums it up....
I spend nearly all my money on essential health supplements, health products and natural , toxin free beauty products. I even make some of my own to save a bit money when I have the energy.
But I'm still not 100% healthy.
I have improved slightly, and no doubt, if I stopped everything that I'm doing to help myself now, I would quickly become bed bound again.
So when do I get the break??
I've felt so close to recovery at times only for it to slip through my fingers again. It's always so unpredictable.
Will this be the rest of my life?
Is this what M.E really is?
Do I really have M.E? I haven't been tested for so many other things, the NHS don't seem to care...
Do I have a mental health condition that contributes to my chronic health condition?
I have been told so many times that I do not have a mental health condition, and my reactions are totally normal measured up to what I'm going through.
So why am I made to feel like I'm going fucking nuts?!
There is always at least one person that I meet in my life that makes me feel like I'm not doing enough to help myself get better. It's so undermining and disheartening when strangers, family, or healthy friends grill you about your health and healing strategies.
Just because you heard a story about someone healing themselves from CFS, doesn't make you an expert on the matter, nor does it give you the right to lecture me about it, assuming that I do nothing to help myself.
I might not even have M.E!
When people force me to tell them what I do, it stumps them - "So if you're doing all that, then why are you still so unwell?"
Boy I wish I had the answer to that question, I might be able to get better then!!
"But you look so well, surely you must be doing something right!"
Yeah... No shit Sherlock, I'm doing everything I possibly can!
I hate having the M.E diagnoses.
Ever since having the M.E label on my medical records it's almost impossible to get new tests and scans for other possible health problems.
Which is the main reason why I have to pay to private health care. But at least they actually want to help..
I really believe sometimes that the M.E label is just a money saving scheme. The doctors don't know what's wrong with you and they don't want to spend any extra money trying to help you. So they fob you off with antidepressants, sleeping tablets and painkillers (which cause more problems in the long run) and just tell you to get on with it...
I believe this for at least 2 reasons.
1 - Because when doctors dismissed my insomnia, 24hr headache and nausea as M.E and physiological, the chiropractor revealed trapped nerves and other problems which over time, are fixable. I no longer have to take sleeping pills or headache preventatives to numb these symptoms, because I am dealing with the root cause of the problem.
2 - When doctors dismissed my digestive issues to IBS, M.E and stress, and told me to take a tablet and live with it - My nutritionist educated me about the REAL issues I have, has since put me on a special diet and supplement regime, and my digestive problems are very slowly improving.
3 - Doctors didn't look into why I had acne and tummy aches when I was young, they just put me on antibiotics and rennies and told my parents to not change my diet.
I found out very quickly with the help of a nutritionist that
I'M ALLERGIC TO MILK.
Milk gives me a rash, it makes the skin in my mouth peel and bleed, and if I ingest it it feels like it's ripping my stomach to shreds, and I get loads of acne spots!
We are hoping that once my gut has healed, the rest of my body will follow, and my other symptoms will some day vanish.
So what does the medical industry know about chronic health conditions? Because from my own personal experience, they know pretty much nothing.
Painkillers, antidepressants, sleeping pills etc, are not the answer, the cure, or at least not for me, in any way helpful. One thing they do make though is money, lots of money for pharmaceutical companies ...
The symptoms that I am having treatment for are problems of their own. They are not caused by M.E - they are individual problems, that cause lots of other problems, it's a dominos effect.
So do I have M.E, or do I have an abundance of problems that wreak havoc on my body?
Is M.E part of the problem, or THE problem? Is it a symptom, or is a condition?
I find M.E hard to believe because there is no definitive tests for it, if there is, I certainly haven't had it! It's just a game of russian roulette of standard blood tests and a questionnaire.
The only treatment for M.E is coping strategies and pacing. Prescription drugs that for me personally prove useless.
It will be a few years I expect before any real biomedical recognition will happen for M.E sufferers.
It will be a sigh of relief when M.E is recognised as a physical, biological condition. It will be recognised as real, and not joked about.
I believe that the lucky ones who did get better, did not have M.E, but a number of symptoms or a serious virus that took years to recover from. Simply misdiagnosed. Because if there was a cure for M.E, there wouldn't be so many of us suffering, SOME ACTUALLY DYING FROM M.E!
There is a glimmer of hope for M.E sufferers. To which a number of charities are funding into biomedical research for M.E
The Rituximab trial for the UK is raising money for human trials, and holds some hope to helping so far.
Donations would be really appreciated.
Also, this guy is pretty awesome - He goes by the name RunningForME on Twitter He has done numerous amounts of fundraising and just keeps on running! It's people like this who keep me going :-)
2015 - Over half a million pounds raised so far :-) We can do this if we keep donating!
INVEST-IN-M.E
Thank you for taking the time to read this. I may add extra paragraphs as time goes on.
Here's a pretty picture. :-)
Other posts -
Should I Buy a Wheelchair?
My Teenage Hell
Medication and Me
Doctors Over prescribing Medication and Me
Tips for living with a chronic health condition
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