After Diagnosis

Hi guys

I’m so sorry that it’s been two weeks since my last proper original post/piece of writing but as you probably realised I’ve been flirting round the edges of playing the dangerous game of boom and bust.

Way back on the 15th March I told you about how I came to be diagnosed after ten years of on again, off again bouts of ever worsening fatigue and poor health (both mentally and physically) and I said at that time that I would tell you about what went down afterwards. Well today’s the day; I will talk about ‘treatment’ and work but I may get things not quite in the right order because my memory of that initial six months isn’t great, I was under a great deal of stress and it was the first time that I really became aware of discrimination, from both my Doctor and my employer.

The first thing I remember feeling when I got my diagnosis was elation. I know that sounds weird but I had been so poorly for such a long time and I had been misdiagnosed at least three times too so at this point I was like “Yaas! Now we really know what it is, we can do something about it! I can work just as hard as I do at everything else, at getting better!”

I went to my Doctor, almost overjoyed, everything made sense and now he was going to tell me what to do to make it go away and that would be that…

Except it wasn’t.

This is where I think doctors of all disciplines misunderstand CFS/ME patients. There is a school of thought that we want to be ill, that it’s psychosomatic and we derive some sort of pleasure or attention from being sick. I think the real situ is that a lot of us wait such a long time to be diagnosed that when we have a label for it and think there’s going to be a plan, that we can come off like we are happy we are sick. Just a little bit of thought on their part should really allow them to see past that.

So I remember being a bit taken aback that my Doctor’s attitude seemed almost dismissive, he didn’t have a plan, he hadn’t even read the diagnostic letter and he only wanted to talk about antidepressants and CBT. I couldn’t understand – why would you treat a neurological disorder with those things?

The first thing I remember about work was the need to go part-time and how unprepared they were. The hospital doctor wrote them a lengthy letter because I had been ill for several months (what I now recognise was a relapse) and I needed some ‘evidence’ to ease the pressure I was being put under. The letter clearly advised that CFS/ME is an acquired disability and went on for almost two pages as to the impact and symptoms etc. My employers were not sympathetic in the least. They wanted to wait a month and have meetings about whether they could ‘accommodate’ me but I was so ill at the time, I explained in desperate tones that I needed it to happen straight away and that if it was a health issue, I thought they had to agree…. “I mean, what if I was on chemo?” I said.

My line manager was previously a long-time colleague of my husband’s and knew what kind of people we were in terms of honesty but he still treated me with suspicion. They allowed me to go part time but I was still off sick a lot and so work decided to send me to their own occupational health people… a private health company, paid by the employer to give a medical verdict. Needless to say, although they agreed in general with the findings of the Specialist at the Western General, their prognosis and assessment of my situation was much more heavily weighted towards my employers.

One of the things that both Docs did agree on was that it would be a good idea if I could work from home for some of the time. That should be a shoe in, I thought, after all I had remote access and I had worked at home when the weather was bad or I needed to accept a furniture delivery, as had my colleagues when childcare was an issue but when it came to letting me work from home due to my health/disability they just would not accept the request.

One of the issues that my employer and their private doctors had during this time was my ‘treatment’, they kept going on about how if I didn’t have a treatment plan then it was my own fault that I wasn’t getting better so why wasn’t I pushing for one. But at that time there wasn’t any specialist treatment for CFS/ME in the Edinburgh area. So, what I was offered by my doctor initially was a Lifestyle Management Course at the Thistle Foundation.

Keen to show willing and honestly prepared to try anything on the off chance it worked, I agreed to go to the course and got the time (3 hours a week for 10 weeks) approved by my bosses. I was hopeful.
The first day I arrived at the ‘Lifestyle Management Course’ I realised it was some sort of group therapy. A bunch of us sat around and were presented with workbooks.

The topics to be covered were
• positive mental attitude (focus on the can do and the possibility of recovery)
• nutrition (how to divide your plate into food groups, portion sizes, avoiding caffeine etc)
• Sleep hygiene (bed time routine, what to do if you can’t sleep, screen time etc)
• Mindfulness meditation, gentle exercise and stretching and keeping a diary

We were told we would workshop through various discussions on a white board and above all else, we must never give each other advice on our illnesses.

Now you may think that all this sounds fairly reasonable but I’m going to ask you seriously, would you say that sounds like a TREATMENT for a physical disease? Do you think that if someone had Lupus, MS or cancer they would be sent to be taught how to eat, sleep and stretch?

By the end of the fourth session I was enraged. Never have I ever attended such a patronising load of utter twaddle in my life and I’ve been on business management workshops! The level of the teaching wasn’t even adult to adult, it was like primary school stuff. I would say that anyone who has gone to this type of thing and benefited either was seriously devoid of even the most basic self-care knowledge and/or didn’t have CFS/ME in the first place.

I’m going to swear now so please excuse me, but it makes me so angry to even think about it. I honestly do not know how that shit even gets funded. So after the fourth session I didn’t go back, I couldn’t, I would have said something I regretted. I tried not to be a total git about my feedback, tried to say maybe it just wasn’t for me but in reality, I was insulted.

Shortly after that my GP advised that the Astley Ainslie were running a pilot specialist clinic offering physio and CBT. I was still reasonably OK pain wise at that time and was practising yoga at home several times a week, still being in the mild category of symptoms so I opted to take the CBT.

Again, I didn’t really understand why this was the treatment for a physical disease but at the same time, I needed someone to talk to about it all and I was worried that if I said no, any further help would be withdrawn and that I would be accused of not trying or not wanting to get better. There was an expectation both from my GP and from my employers. And I thought if I jumped through the hoops that were being asked of me, then I would get some proper help. I also thought, well if these are the prevailing thoughts on how to treat the thing then maybe I need to just be open minded! I’m an intelligent person, if I can think myself better, I will.

There were only 16 sessions offered, the treatment would be finite and after that…. Now, I’m not going to say the CBT was as bad as the Lifestyle management course because the psychologist was young, smart and open minded. She did not stress getting rid of ‘unhealthy beliefs’ but rather focused on getting me to slow down and pace myself, she helped me to come to terms with the fact that my life had changed and told me to spend some time grieving for it. She encouraged me to look for a new normal and accept that I might not make VP by the time I was 40 after all…. in fact, I might need to forget about making VP altogether.

She was very kind. I cried a lot. I cried even more when our sessions came to an end. She wrote a nice letter to my employers and doctor for me and then she went off to help terminal cancer patients come to terms with the end of their lives.

My point being that, yet again, this was not actually a TREATMENT for my disease. She was there to teach me how to cope, not to cure me. But the big problem was that everyone, including my own bloody useless GP and my employers thought that it was supposed to be a cure, if I pulled my weight and applied myself properly (sarcasm drips from sneering mouth). I would be treated for 16 weeks and that would be that.

Of course it wasn’t…

My Line Manager’s boss, who sat immediately opposite me and had seen me deteriorate over the months set about side-lining me. I was excluded from meetings, there were hushed conversations in corners whilst glancing at me. My life became uncomfortable in the office, I got paranoid. He laughed at me and derided me to my face and encouraged others to do the same, especially when I got up to leave bang on the clock (which I was supposed to, to preserve my health). I remember specifically challenging an awful woman called Sharon as to why she was laughing at me, while my cheeks stung with anger and embarrassment. Then I got a reputation for being ‘difficult’.

Under guidance from his MD, who also wanted me out, he isolated and bullied me. I was effectively demoted and my role was changed to something I had no experience of, when I couldn’t do the work I was criticised. It was horrific and in the end the stress was so much that I had a big relapse and went off long term sick. I wrote a grievance letter but I was too ill to attend the relevant meetings and they refused to come to my home to conduct them.

After many, emotional discussions with Mr M.E., where he begged me to put my health first, I quit my job. I wrote a strongly worded resignation but I did not pursue action. I wanted to but I was too sick and doing it would have made me worse. I think they knew that and were counting on it.

Because of my reaction to the stress, and my relapse, my GP treated me even more like I was experiencing a mental health condition. He was dismissive of my physical symptoms and never wanted to investigate any of them. He seemed to forget altogether that I had been diagnosed with CFS/ME, all he would talk about was depression and antidepressants. And to be frank I probably was depressed, I mean no one was listening and no one could help me. I’d say I was justified, would you? Diagnosis was supposed to be the start of getting better not the start of accepting that my life as I knew it was effectively over!

I completely lost faith and trust in my GP and I was so hurt and angry over the whole experience. I didn’t think this type of thing could happen in this day and age?!

Around that time my CFS/ME tipped over from mild into moderate and I spent weeks and months barely able to move from the bed to the sofa and back. I realise that there were many contributing factors but my belief is that it was primarily the way I was treated by my employer and my doctor and that the very high levels of stress impacted my symptoms.

Since then I have been left to pretty much manage my condition on my own with no medical support.

I did manage to get myself back to the mild category after about 8 months solid effort but sadly I wasn’t able to stay there and that my friends is a story for another day…


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