- Chronic Fatigue Syndrome / M.E.
- Interviews
Michelle's interview
How did all start?
I had recurring fluish symptoms as a child. I always had tissues in my pocket. I started my 1st job aged 13 and worked at weekends evenings and mornings. At age 21 when I pushed myself hard physically, I would get 'run down' with sinus troubles. I took on a 14 hour shift. During the 8 weeks Id did the long hours I was doing heavy physical work. The fluish symptoms developed strongly in response to the work. I would be seriously ill 48 hours after doing the shift. During the shift I got chest pains (it wasn't anxiety) It was a malfunction in my liver of stomach. I also got giddy, my body went into an emergency mode...I believe its a deficiency of a chemical.
During the 8 weeks, each time I ignored my bodies malfunction and forced it to continue, the amount I could do before the malfunction occurred became smaller. At the end of the 8 weeks, walking a few metres was enough to bring the physical reaction. I got into bed realizing that crossing the line was causing the increasing debility. During the first year if I didn't push my body beyond its means, it was able to quickly repair so that I could do a larger amount before the chest pain adrenaline fluish malfunction. But I was in my early 20s and very unaccepting of my limits. I wanted my life back..so I did things instead of resting...undoing the repairs...then the ability to repair reduced. If I had got my diagnosis promptly and been told not to overdo things by my doctor straight away...instead of after 6 months, I would have made a recovering. But because medical professionals don't listen, I have not been able to leave my house without an electric wheelchair since 1997. I lost my 20s and 30s. I have been on benefits for 20 years. All this is because ME patients are not diagnosed or taught to only do 80% of what they feel capable of until they have been ill for 6 months. Also when activity causes physical damage, they cannot get the sick notes or support because they have no diagnosis. Everyone is making them argue and fight. This 6 months is when the person does lifelong physical damage, trying to get their rent, not wanting to lose their job, not wanting to become an invalid. Hiding their illness from their partner and children. the person cannot stop all activity. So the damage grows and they only stop when they realize how serious it is. But by then it is too late. if the person is given bedrest straight away for 4 weeks, that includes stopping all commitments and arranging childcare, the person could be 50% recovered within 4 weeks, and 75% recovered in 12 weeks
Do you already have a diagnosis? How long did it take you to get it?
If I had got my diagnosis promptly and been told not to overdo things by my doctor straight away...instead of after 6 months, I would have made a recovering. But because medical professionals don't listen, I have not been able to leave my house without an electric wheelchair since 1997. I lost my 20s and 30s. I have been on benefits for 20 years. All this is because ME patients are not diagnosed or taught to only do 80% of what they feel capable of until they have been ill for 6 months. Also when activity causes physical damage, they cannot get the sick notes or support because they have no diagnosis. Everyone is making them argue and fight. This 6 months is when the person does lifelong physical damage, trying to get their rent, not wanting to lose their job, not wanting to become an invalid. Hiding their illness from their partner and children. the person cannot stop all activity. So the damage grows and they only stop when they realize how serious it is. But by then it is too late. if the person is given bedrest straight away for 4 weeks, that includes stopping all commitments and arranging childcare, the person could be 50% recovered within 4 weeks, and 75% recovered in 12 weeks
For what medical specialties have you been treated? What has been the most useful specialty for your?
The only correct information the NHS gives is the 80% rule they have nothing else to offer people with ME because they haven't identified the physical malfunction in the body. They dont even have a diagnostic test even though millions of people have asked for treatment. Ive been waiting for 20 years for anything...still nothing. I waited and lost my 20s. Then I waited and lost my 30s. Now Im losing my 40s and still the NHS has nothing. Millions of people in are lay in beds waiting for someone to actually give a damn enough to do some proper medical research instead of just dismissing us as delusional and imagining the physical malfunction.
What has been the most useful thing for you so far?
following the 80% rule, getting a diagnosis & advice on the 80% rule & the macrobiotic diet.
What have been your biggest difficulties?
Stigma, ignorance, reckless foolish advice. Judgemental comments. Long term unemployment. Not being able to find a partner. Being too ill to be a parent. Exercise is dangerous as it physically damages people with ME but constantly being told exercise reduces fatigue and so I need to do it by idiots. Telling someone to do lifelong damage to themselves or else they will be sectioned, sanctioned, made homeless, have their kids put into care.....this is the situation of people with this illness. If someone had broke their spine you wouldn't threaten to remove food and water to incentivize them to get up and move about. Because it will mean they have to spend the rest of their life in a wheelchair. Its the same with ME. Force exercise and they will spend the rest of their life in a wheelchair. It is THAT EVIL. as evil as saying to a broken spine that flexing the spine is good advice. Many of us have lost faith in the medical profession in that they cannot recognize or treat what is in fact a very obvious physical malfunction and that after 30 years campaigning we are still told we are imagining it, making it up or that after the equivalent of 30 years of paralyzing people by flexing the spine, we are still being told that spine flexing is the cure and people who lie still, don't want to get better. Comments on the street about how my legs are not damaged and that if I can walk 5 metres I should walk 1000s of metres and it will 'do me good'.
How has your social and family environment reacted? Have your social or family relationships changed?
At my worst I was unable to speak for a few years. I see myself as a burden. This is not something I felt. It has come from repeated messages from many places. The benefits system, reluctance to help from carers and family. Rude comments from strangers, buses pulling away early so they don't have to put the wheelchair ramp down. Paid carers letting you know how tired and short of time/late they are and feeling guilty asking them to do basic essential things
I now feel paranoia and fear of being attacked, neglected or abandoned. I am going to have no family as my illness made it so I didnt have kids
People don't understand that activity does long term physical damage if it goes beyond a small amount. So socially you become angry & upset. You are betrayed by those you love. It as if you are a diabetic & everyone is saying "sugar is good for you". That's your social situation & family situation. Your told you're a liar & hallucinating when you say you react badly to sugar (exercise).
I have been betrayed many times. Nobody understands the physical situation except those who have experienced it. Yes I am negative. But that's after 20 years of wall staring. Anyone would be. The fact that the people don't go mad & kill themselves after years of lying silently in bed shows how powerful their mental health is. The problem is not the mind it's the body & after 20 years I'm sick of having to explain myself to people. I tell them I only have a small amount of energy...but this is not enough..they can't stand to see me living like this so they want to see an improvement. They want to see me increase my abilities. They ask me to try to do more not understanding it causes long term physical damage. Then when I can do an increased amount, they start to try to get me to carry on at that level saying oh you could do it the other day & arguing. Basically if you can do something one day & not the next, people don't believe its physical. If you can do a small amount of something people believe you can do a large amount of it. People don't understand that you need to lie still even though your legs and arms can be moved. Basically my social life is filled with scepticism about people, being misunderstood, judged, paranoia that I am being gossiped about by busybodies who think they know what's best for me. I cannot be myself open up to or trust people. Not because they are bad but because the minority are bad & I am trying to avoid those people.
What things have you stopped doing?
cycling walking working sport driving swimming dancing mountain climbing, backpacking, cooking, cleaning, DIY singing crafts, lifting, running, jumping, sleighing. Entering shops with steps. Going upstairs
What do you think about the future?
My future is growing old alone with busybodies circling around me threatening to remove my electric wheelchair, stop my rent money and trying to find something to do for 20-30 years that only uses a tiny amount of energy and it takes me 30 years to get bored of.
I want to do 2 hours a week bookkeeping for someone & to be able to keep smiling. I want to stop letting peoples ignorance get me down.
I have a euthanasia plan if the busybodies decide to starve me back to health believing ME is psychological or that my attempts to increase activity are crimes that should be punished. I will not do this whilst my parents are alive.
So far, which years have been the best years in your life? What have you done during them?
My childhood. I was considered 'cute' then instead of a burden or depressing to look at so people were nice to me. I loved to play without a care in the world. To run & jump & do acrobatics. To explore the woods & fields. I always wanted to climb a tree and make a tree house. I always got top marks at school & that made me feel awesome. Every day I went somewhere & accomplished and came home feeling proud of my achievements and like my life was going places. I loved to cycle, repair my bicycle and do paper rounds that I did morning and evening. I liked learning how to cook. I stayed behind after school and did extra school work voluntarily. I loved playing games & Christmas. I wanted to join Santas crew and make toys and presents for children. I used to think about doing it. preparing parcels & sneaking them to people so everyone would be surprised and also to make the adults believe in Santa not as a real real person but as someone that we can all become, and make real
What would you like to do if you didn’t have your condition?
I would have a highly paid job in a specialized computer skill or accounting.Or I would be a handywoman fixing things and painting & decorating for people or a self employed gardener doing gardens for the elderly. I would go backpacking, scuba diving in the tropics. I would visit temples in Asia. I would be glamorous with my hair done in interesting ways & creative dressing. I would have a campervan. I would be a Buddhist teacher giving a class one evening a week. I would be a parent surrounded by love and fun and laughter not a deathly silence & solitude. I would be a grandparent. I would be a loving wife who makes beautiful meals for when her husband & kids come home. I would show all this to my parents & fill their hearts with joy. THEY would be grandparents. My sister would be an aunty as she has no kids. I would have a family dog that would be so awesome. I would read stories to my kids like my mum did for me.
If you had to describe your life in a sentence, what would it be?
Waiting for the NHS and the government to get its act together for 20 years & still they have no treatment or definition of what the malfunction in the body is
Finally, what advice would you give to a person in a similar situation?
Do not break the 80% rule to be polite, to be a good parent, a good employee or because you want to prove to judgemental people that it is a physical thing stopping you not mental. Do not spend the 1st 6 months fighting and arguing with all the idiots. Rest properly. Get better. Then fight the idiots. Get someone else to organise the set up of your rest space & do it immediately. Dont continue to damage yourself so it becomes a long term condition. Your bodies 1st attempt to repair the damage is strong because it has a lot of chemical resources to do so. If you waste these chemicals...the 2nd & subsequent attempts it will have a lot less of the chemical so improvements will be harder to gain & slower. If you are enraged about having to stop everything dont fall prey to that rage as you will break the 80% rule. If you are panicking about work, your kids, money, telling your family, the disbelief, your GP not being supportive or giving the diagnosis for 6 months, the hell of being treated like a liar & criminal by the benefits system...this is when you will overexert & do long term damage & become disabled for life. The rage and sense of betrayal by those closest to you is very powerful. Losing everything like this. The rage makes you break the 80% rule, so if you have it get an anti depressant to keep all the emotional response to becoming PHYSICALLY disabled in check. All you have to do is keep the 80% rule correctly for a few months. If you dont then you become disabled for life.
If you have had it many years & did the damage, the macrobiotic diet turned it around for me. I was bedridden unable to speak, chew my food etc without getting fluish symptoms & chest pain. Now I can go out every day. I no longer have to lie in a room with a commode getting bed baths. Every day I go out. Once you have it long term you can still get worse even if you keep the 80% rule. For me the diet made a massive difference and made it so I improve keeping the 80% rule
