Severe M.E and what it was like for me
Above is a photo of when I started becoming ill again and unable to stand the curtains being opened as my brain was unable to stand the light, this was 2010, eleven years after I first got M.E. It is by no means anything like as bad as I looked at my worst when I was very severe and my pupils were tiny pinpoints, with my eyes bulging out, eyelids never able to make it up to show over a quarter of my eyes balls and face all swollen and white.
M.E is what I call it for me personally rather than C.F.S not only because that was what I originally got diagnosed with, but for me it seemed like although it probably started in my immune system with the virus, that it primarily hit me neurologically, as my brain and spine felt like they were inflamed and very painful for much of the time. And the myalgia for me was also profound. It always felt like a neuro~immune condition in which fatigue was one of the secondary symptoms.
In 2002 I was diagnosed with a major motor dissociative disorder and fugue from one consultant, this diagnosis and how it was relayed to me caused a lot of confusion and pain, and was and still is a complete mystery to me and other medical professionals I saw thereafter. No one I know personally has ever thought I had this. All I've read about it tells me I never had it and it has never been confirmed with any G.P or specialised at any time thereafter.
This is going to be the hardest post I've ever written as for me personally I'd rather move forward and not have to think about or keep going over the events of how this this horrendous illness impacted not only my life, but also my family. I'm not writing this post or any of these posts for me...I am hopeful that by sharing my story, that this information along with other peoples stories will keep initiating big shifts and attitudes and things will really change big time, and that people will REALLY get how very very bad this type of disease can get. And that the vulnerable individuals will get the support, empathy and respect them and their families need.
In 1999 I sustained a head injury. I hurt my head and neck and felt dizzy, sick and woozy. I didn't go to the doctor or the hospital, as even back then I didn't like how many of them were with me or my children at times too, so I often just got on with taking care of our illnesses myself. Over the next week I kept dropping things, my memory started failing, my speech became slurred, I kept having to lie down as I continued to look after my three boys all under 5 at the time as could barely keep my eyes opened. I struggled to read the boys their story in bed at night, I could hear my voice and sounded really strange as though I was really drunk, the words in the book were blurry. I had three jobs at the time one as a childminder, another selling children's books to schools and nurseries and then 2-3 nights per week I'd work as a waitress for around 8 hours a night. Anyway I took a week off my job and thought I felt well enough to go back in but then discovered I couldn't read the keys on the computer keyboard to type in my orders, thereafter I was taking a couple of sizzle platters up the stairs to a table and I toppled over, so the manager told me to go home. That was to become my very last employed work in 19 years.
I went to my doctor after about two months as by that time I was in pain with my head, neck, muscles, skin, bones and I felt very weak and was also still struggling more and more with speech, reading, sickness, dizziness, moving my body or using my mind. In fact all of these had become exhausting like having flu, being really badly hungover and also being pregnant all at the same time. I explained to my doctor that I'd had quite a bad virus in the year leading up to this injury and I'd also had a lump in my throat and this random chocking cough like thing that just came out the blue now and then, and that I also felt like I had something stuck in my throat all the time.
Anyway the doctor told me I had this thing called M.E and there was nothing that she could do apart from give me anti depressants and pain killers. So I took those which didn't help. I ended up completely bed-bound for pretty much all of the next two and a half years. I had various aids like a commode, indoor wheelchair, outdoor wheelchair, things to help in the kitchen etc...I had to have carers helping with the children for a few hours twice a week, a home help twice a week. At first the friends I had at that time were sympathetic and helped out now and then but as time went on unfortunately most of the 35 of them dwindled and fell by the wayside, as did family for one reason and another. Then I learned about fair weathered friends.
I then had to make major changes to my personal life as I realised that I was now in an extremely stressful, unsupportive and very toxic relationship. I left my home which we'd bought and done up from scratch when I was 22, it wasn't our first home as we had bought our first flat when I was 19. Anyway there was no possibilities left open for repairing the relationship at all and as my husband refused to leave, I left wheelchair bound with the children, a few small bits and pieces from the house, and set up my new un-stressful life from scratch as a single mum with no family and one supportive friend.
There is much which I cannot write about as it involves the privacy of others, but I felt it was very relevant to touch on this subject a little as people should be aware to what extent lack of support can further affect illness and recovery. Places like the social work department and many other services including the police and legal services, friends and families are shutting their eyes and walking away from these types of things at times, and even supporting the perpetrators rather than the victims/survivors. This is not just my experience and all of it can have a real snowball effect on adults and children's safety, welfare and wellbeing. We've had to do a mammoth amount of work as a family to get over this. This would not happen in in other cultures, or many of the types of things that happened wouldn’t even happen within packs of animals.
There is so much talk about how much strain the services are under and I get it, I really do as I have seen it, felt it, been saturated in it. I have friends and acquaintances who work there or have 'been there' and are affected. But still we cannot ‘not’ speak of the repercussions or else how does positive change happen. We can all make excuses about lack of this lack of that too much this, but what is really lacking here. At the end of a day we are all individuals within a system and we don't have to conform, we DO HAVE FREE WILL and we all have personal, ethical and moral obligations as human beings regardless of the obstacles.
The backlash of these things can affect families for years and some for lifetimes, and often go down generations unless people speak up. I spoke up many times throughout this but often on deaf ears, and not only on behalf of my own family but also for other children from other families too who came to me, or were sent to me in one way or another. But I didn't stop at the deaf ears I continued until support services paid attention, listened and did something, it took a lot of years in some cases for this to happen though. It was very very difficult dealing with all the apathy from all the people who are paid to help protect vulnerable children, and adults, and whilst I understand that there are many difficult sets of circumstances and it's not an easy job by any means, people are slipping through the net and in extreme cases lives get lost!. There is much abuse going on in all areas of most services from all angles which is not acceptable on any level of understanding, and the bureaucratic excuse doesn't wash in any way with some individuals attitudes and dismissive approaches. I wish it was a just a case of hugs and love, healing prayers, fluffy stuff, unicorns and cosy blankets to purify the toxicity but it’s just not. And masking our feelings about these things isn’t authentic and definitely doesn’t make forgiveness and peace come easier. There is so much talk around about positive and negative emotions ~ emotions are emotions and need to be expressed and honoured not judged. Anger, like a fire, is a primal force. When left unchecked, it can be destructive, yet when managed and used wisely, it can be a beneficial and powerful instrument that leads to enlightenment.
When we are very ill with M.E it is very difficult to be around highly emotive situations as we can feel overwhelmed when our system is in overdrive. It’s at these times that our judgement about what feels right for us to be around becomes paramount to our emotional and physical wellbeing.
The photo above is me in 2005 after I had started my first lot of college training to become a holistic therapist. My health had gone from severe M.E all the time to moderate most of the time and severe now and then with occasional mild. I was a lot less stressed there despite being a single mum, but you can still see the deep sadness in my eyes as there had been much pain, sadness and loss amongst many other challenges.
I spent many years still battling this M.E and in 2006 after all the continued goings on in the dark background of other peoples agendas, including all the bullying that goes on not only in schools and not just with pupils. It got so bad for my son and the head teacher would do nothing about it because she was too scared to approach the person involved. I had to actually take one of my sons out of school when he was 14 and teach him at home for the last years or so because he was becoming so ill with all the previous and continuous goings on with teachers and pupils. It was when I took him out of school that his health improved and I saw him flourish education wise, until he went to college for three years.
With all of this pressure and stress from much more than I've even mentioned here I felt the severe episodes getting closer and closer again. But on the bright side there were lots of really good things going on with me as far as being able to get out and and about in-between severe episodes and going places with the boys. Managing a big environmental art, and awareness project for the local school children, creative events, co-ordinating community arts, writing, drama and music groups, volunteering my help with therapies, writing and art with special needs groups and individuals.
In 2009 my children were getting older and didn't need all of the energies that I had put into what they needed, so I thought that it was time to maybe take some time to get to meet new people as it hadn't been easy under all these circumstances.
I had been creating lots of art myself and taking many photos and had also started exhibiting in my friends exhibitions. I started going to a support group to meet new friends. Unfortunately I ended up getting swine flu leading up to an event which had me completely floored for three weeks, which actually wasn't too bad in the grand scale of previous experience. I put my quick recovery down to the fact of the kindness of my new boyfriend at the time who later became my 2nd husband, as he constantly kissed me, helped me and cared for me, without a single concern that he would be infected himself. He himself has M.S but that didn't stop him, and I admired him at that time for all the love, empathy and kindness he showed me. I suddenly felt that there was another person just like me which I hadn't come across for a very long time.
It's weird when you have been so isolated for massive stretches as when you come back out into the world lots of things have changed, and whilst for others it has been a gradual thing for me it was all so very sudden and shocking really, much of it surrounding people and attitudes.
Anyways I recovered from the swine flu, then a lot of bad things were happening around our neighbourhood and I just couldn't have my children and I living there anymore, so we moved out into the beautiful countryside, this was now the forth house we had to move into in six years. Which was great for six months...
Then we had a horrible tragedy with one of the dogs. It was late at night and my future husband at that time and my son were having a jamming session out in the outhouse at the back of our cottage. It was late and I let the dogs out the front door for a last wee run about before bed, by the time I walked through the house to the back door to let them back in. Twiggy who was my husband to be's whippet had run so fast round the back excited to see her dad that she didn't stop and smashed head first into the glass door, she died before we got to the vet. We were all traumatised by this and I blamed myself for a long time, as I kept thinking if only I had let her out the back door she wouldn't have picked up speed.
This coupled with the other bits and pieces to do with economics and hidden agendas started my stomach problems again and also my son who hadn't had any eczema or asthma for seven years started getting it really severely again, as he saw Twiggy smash into the door.
Then as I was becoming more and more bed bound we had a massive problem with rising damp in the cottage which within a month of it first appearing had gone half way up the walls, into our mattress, into clothes and shoes in boxes in our cupboards, on the back of units, the couch etc...etc...Our landlord came in with bleach (which is one of the chemicals I'm sensitive to) and washed it off the walls then tried to blame us for it despite him not fitting properly ventilated windows. Yes well the truth has a real habit of eventually always coming out when I'm around.
So next thing I knew I was in agony again and this time not only did I have severe M.E it was very severe....
Starting from my head, my scalp was very sore and sensitive like I'd been burned, skull was agony, the nerves too, the back of my head felt like someone had smashed it with a brick, my eye balls again protruded out the sockets and were very sore, my pupils tiny, my eyelids half shut, very dark shadows under eyes, my face swollen, right side of my face was numb and sometimes distorted almost like having had a stroke, my ears sore with sharp pains, my head dizzy, noises even as quite as someone walking on a carpet with socks on vibrated so much in my head that I'd be dizzy and sick, noises even slightly above that were not only excruciating for my head but made the insides of my body vibrate so much that it started a horrible chain reaction within my nervous system. My neck, the back of my head and shoulders were the sorest they had ever been to touch and to move. I was getting sharp pains in my heart, times where I felt my heart was over inflating and suddenly jumping which made me get a flushed face and pins and needles in my hands, I was getting pains from these heart pains going up my jaw and down my arms , my pulse rate was way too fast on resting, often double what it should have been, sometimes it also felt like someone was squeezing my heart really tightly in their hand, I also got what felt like fizzing round my heart it felt like when fizzy juice is first poured and the bubbles are all rising to the top. My skin was sore all over, so much so that the cotton bed covers hurt me. Human interaction of any sort became impossible. All of my senses were extremely heightened so much so that I had to eat very bland food which is nothing like what I'd normally do, and even had to eventually resort to eating only porridge and getting things like very simple soup liquidised as I could no longer chew properly and my stomach would be absolutely agony digesting anything else. My spine has always been sore every day for all of the 19 years. My organs all sore, all my systems dysfunctional...bladder very irritated and feelings of always needing to go, pancreas sore to touch, lungs sore to breath and also like there just wasn't enough air in them, liver sore to touch, intestines sore most of time, sore to touch, spasms, cramps, bowels spasms, sore bowel, constipation, diarrhoea, adrenal gland and kindneys' sore. Joints sore, swollen knees, fingers, toes, hips. Tremors and cramps in legs. Achilles tendons sore and very stiff. Random swooshing feelings throughout blood, random twitches in eyes, veins, arteries, nerves? Random nerve pains all over body in various areas at different times like being stung by ten bees all at once. Sore, stiff and aching bones. Then fatigue all over with heart, lungs, organs, body and mind. Lymph nodes constantly sore throughout all the years. Nose bleeds, gum bleeds, teeth starting to crumble and chip, inflammation of gums and lips, pain and sores in mouth, hair thinning and falling out in patches, little lumps appearing throughout around outer ears. Taking ages for infections and wounds to heal, nails stopped growing. Itchy sore skin all over and under the surface. Loss of balance...falling over...banging into things. Forgetting words, not understanding what words meant, not being able to take in the meanings of even four letter words, not understanding people when they talked, and eventually forgetting who my sons and husband were on occasions. Endometriosis, intolerances to food, EMR, medication intolerance, redactions to chemicals, unable to handle emotions of others, reading, TV, looking, listening, moving objects...So you can completely understand why doctors would feel completely overwhelmed by all of this, poor them it must be a nightmare for them!
I needed to use an indoor wheelchair and needed help to get into it to go to the loo, outdoor wheelchair, bed rail, perching stool for kitchen, bathroom over toilet commode with rails, cutlery for gripping, neck brace, wrist braces. I was on 178 drugs each week which include all the ones for the side effects until they didn't work then the only thing left they could offer me was morphine, but I said no. Over time I had doctors shouting at me, doctors being impatient with me, doctors draining in front of me, doctors crying in front of me, doctors disbelieving me, doctors just not caring at all in any way. What a shame I really did feel for them. I mean I often felt like saying is there anything I can do to help? Is there anything at all I can do to make life easier for you? Then I came up with a genius plan...I thought to myself I know why don't I just stay away from you all ~ then that way I won't have to see you suffer so much. See told you it was genius!
So back to the damp cottage after a few months of putting up with all of this and the dampness which affected my health and my sons and much of my furniture, bedding and clothing which got infused with the damp smell which never really went away, and we had to get rid of a lot. Of course we should have taken our landlord to court for compensation but we didn't as I was way to ill to go through yet another court battle...
So we moved literally with me from bed to bed, with tiny bits of walking, shaking and trying to be as normal as I could. By the time we settled I actually could barely move at all in my bed never mind out of it and I needed a bath lift and my husbands help to wash me and my hair and body. This kind of thing went on for another couple of years and more with little improvements here or there, little moments or half hours of other things every now and then, but mostly I was barely conscious. Then as I started to get a whole lot better I had a miscarriage and they were twin girls. I again blamed myself and that's when I started getting my severe anxiety disorder, which brought about a myriad of terrifying symptoms to add to the big list. At first they gave me diazepam which lasted for a day or two but I couldn't take it as it made me extremely hyperactive and I couldn't sleep at all. Then the next year I got shingles which I didn't find very painful at all but it affected my systems and mad my M.E symptoms bad again. And I took a horrible reaction to the anti viral drugs, then they gave me sleeping tablets to counteract the effects of the lack of sleep which had gone on for two whole weeks and was having a terrible effect on my system. I also was getting extreme anxiety taking any drugs at all by this point as I knew they weren't agreeing with me, but I was also unable to think clearly, desperate and very frightened of all those horrible mounting symptoms.
At some point the paramedics came out and at another point I was taken into hospital in Perth. I was there for about three hours before I got taken to a bed. Then they sent me for a lung x ray. I was finding it really difficult to breath and my blood pressure was high. I had been having chest pains and my heart rate was very fast for six hours, the pains were up through my vagus nerve and into my jaw and arm. They took blood. The doctor sat on my bed and kept sneezing and coughing without covering his mouth, his eyes kept closing as I was talking and as he was talking. There was a woman across from me who was ringing the buzzer to get help to go to the toilet, none came as they were too busy gossiping about someone and their husband, and other things which could be heard clearly by us patients in the middle of the night. By the time someone could be bothered dragging them selves away from the gossip the woman had done the toilet on the floor. She then got shouted at by the nurse and got told she should be cleaning it up herself. I was so ill and weak myself that I didn't even have the strength to stand up for that woman so I just cried and cried at the humiliation she had been put through. The so called nurse then dramatically started cleaning up around the wet bed and floor in a very noisy and angry manner. The floor was only swished with some dry paper towel with her foot. Then there was a change of shift as the morning staff came in and I heard every single detail of each patients history as the nurses loudly passed over information and made quite derogatory comments. I was then overwhelmed by the gossip again when the nurse started telling the patients of all her woes of the day in her private life and her job and how bad things were for her, in the meantime I was bursting for the toilet and I couldn't walk at all at the time so needed someone to wheel me through, so I asked politely and was told no I'd need to wait, unfortunately I wasn't in complete control of my bladder at that time. Next on the agenda was the injection scenario where she just actually came at me with a needle without any warning at all, and I actually felt like I'd been assaulted and violated not only by the way she approached me, but I wasn't even told what it was, or anything she literally just mindlessly came at me, and as she did so I tensed up as I was so shocked, I don't even mind injections normally! There was no swab or plaster offered to sort out the leaking blood, I later found out the injection was to thin my blood, but only because I asked another nurse had anything shown up in the blood tests and was told that incidentally the blood tests to check for heart damage had been knocked over and had to be taken again!
By this time I had had no sleep whatsoever and my anxiety levels were getting worst, the hospital was very busy with students and groups of people being shown around, they didn't have the drugs I had been taking so I was left without. The doctor said I should go home and take paracetamol. My husband called and was told I was fine and he could pick me up to go home, which was so far away from the truth it was like some sort of weird carry on movie with the laughter extracted. The nurse almost threw the paracetamol and discharge letter in the bedside cabinet and it actually shook as she slammed the door shut. This was all written up and done before I had received any blood test results back. When my husband got there I was actually hysterical for the very first time in my life and I was shouting and screaming and swearing at the nurse as I was so badly affected by the whole experience. I left without my results and the trauma of how that affected me when I was in such a bad way has haunted me for years. I actually sat down to write a letter of complaint many times but was so affected by it my mind kept going black and I'd be shaking so much that I couldn't even write it down. By the time I could it do it it was too late to complain. This is my experience and I'm not writing it to put anyone off seeking medical help in any way, it all affected me very badly and it needs to be said in order for improvements to be made. Personally I'm of the opinion that the NHS will have to be privatised for the light that’s been shone on the darkness that has seeped into it all and the abuse in so many areas to be eradicated.
It's been bad enough having to deal with all the other things without having had this carry on too. I suffered in silence even more after that as I got in such a terrible state thereafter when I thought I had to visit doctors or even the hint that I may have to go to hospital for anything. It gave me horrible panic attacks. I still haven't registered with a new doctor despite being here for seven months. I will get there with that though as I've been asking around to hear who is best to register with. I do need to point out though that I did find an empathetic GP in my old village and even though at that time she didn't know what to do she was always sweet to me and called me darling or dear, gave me proper checks, always went over her allocated time, and visited me at home every week for a couple of months. Mostly after that I just went in now and then to let her know how I was dealing with things and to report new symptoms to see if it was outside the realms of my M.E. She did respected what I did holistically even though she didn't understand, and I never once felt rushed, that actually made the world of difference to me. And when I was well enough she even phoned me to ask me if there was anything I could do to help a patient of hers who had something similar, which I did. She also came out to see my youngest son who also got the virus and has had PVFS thereafter and still gets symptoms now and then when he does too many 15 hour shifts for too long at work, or his wellbeing becomes compromised with other physical or emotional stresses...
A comparison in standard of care and empathy was highlighted to me when my dog went into the vet hospital in Glasgow for the best part of a week, he nearly lost his life as I nearly did, but...This boy got treated like a king, the standard of care was second to none, he was spoken to with love, and treated with respect and kindness. The details of his troubles were noted diligently and each and every staff member not only knew of the details of these notes but they knew our boys character too, and his dietary requirements, so that they could make him feel as much at home as possible. We had everything explained to us in great detail and much time and patience exuded to us with answering questions and coming to the best possible conclusion as to what was best for Toby. We were reassured by the phonecalls which came to unrushed and often out with normal working hours. An exemplary example of how our humans and animals should be treated, not only at all times but especially at those fragile, more vulnerable times. I wonder what the big difference there is? Is it just that everyone is not under some illusion that treatment is for free?
Even though I've had really bad experiences and many others have too, and I have my little sarcastic rants now and then. I do see some changes with attitudes these days and there are a bit more support services available too. I do pray for continued research, understanding, peace and wellbeing for patients, carers and health professionals. I'd still love to hear of good stories about the NHS, so if you have any please share them with me...
So that was my severe M.E and thereafter very severe M.E. Then over a decade later severe anxiety disorder, tinnitus, PTSD, IBS, fibromyalgia and endometriosis. All these things only started to improve significantly for me when I started using natural remedies and REALLY getting rid of all toxins from food, products, people and the environment ~ which created the right conditions for wellbeing to flourish physically, physiologically, mentally, spirituality and emotionally. I have what I would call echos of a few things as my system recalibrates and adapts to new regimes. The integration back into society can take its toll too at times for so many reasons, but I always have to remember how far I’ve come and that my whole being has been under an enormous amount of strain. So watch this space as I keep telling myself I’m fully recovered! 🌈🌈🌈
I've often had people say to me I've been diagnosed with CFS but it's absolutely nothing like what you have. And how many names have been thought up to further confuse things over the years, oh my that's really helpful for us, isn't it. Lets just group it all into one little umbrella term shall we and keep it all neat and tidy. Well it's never going to be that neat and tidy within a name and the latest one actually just infuriates me as what kind of message does 'systematic exertion intolerance disease' send out! Seriously! The intolerance to exercise is just a tiny part of a much bigger problem for many and changing the name again is just another insulting brush under the carpet!
Anyway Goosefrabba! as they say in the movie 'Anger management'.
Here are some photos of me celebrating my achievements now as I'm just about to hit my half century.