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 b