Hopeful Road to Recovery

So, I did get to see a rheumatologist and yes I managed to see him privately, got my parking spot. I remember feeling very anxious about it. I went with my husband, by this point even talking about how I felt meant I’d just burst into tears.

The anxiety and anticipation was overwhelming. The hope I was pinning on this appointment was immense, the fear of being told it was in my head scared me rigid and I was really a mess.

I remember walking into the office of yet another medical consultant, he was surly looking, didn’t give us eye contact when we walked into the room. I felt like I had just entered a job interview. I felt I was being judged even before I’d opened my mouth. It may have been paranoia. I don’t remember much of the conversation, except for my voice being very shaky as I was now at breaking point with my pain. I don’t remember much except the assessment. He pushed on my joints “does this hurt?” “no” id shake my head, “and here?”, me “no” shaking my head…. Thinking shit! Why doesn’t it hurt today? I did say to him that he wasn’t pushing very hard! He didn’t respond. He watched me walk, he looked at my curvature of the spine (scoliosis), he looked at my hands, my neck push and prodded me here and there. Amazingly, nothing hurt whilst he did it. He asked for me to get my bloods done, he was concerned my vitamin D was low. And he wanted to see my inflammatory factor, thyroid, adrenals, the usual tests, but hopefully more thorough ones. He asked to see me 3 weeks later. He had mentioned, but didn’t want to confirm that fibromyalgia was a high possibility, but wanted to wait for blood results.

We went home, in silence. The drive home is 20 mins, I wondered why today nothing hurt when being pressed and poked. And then it hit me, literally like I had developed flu, at that moment. The pain spread through my body like fire destroying a forest. Burning in my legs, back, ankles, a raging headache, visual sensitivity, fatigue that felt like the worse jet-lag ever, I felt like insects were crawling up my legs and I couldn’t keep them still. I took my usual concoction of pain killers, which I might add, never really did anything, but I continued to take just in case today was the day they worked for me, and took myself off to bed.

The next morning, I emailed the secretary of this consultant to tell her of my reaction as I thought maybe he was important for him to know. I never heard anything back. On reflection, that reaction, I think it was purposeful in his assessment. I believe that is the reaction he was looking for. I don’t know this for a fact, but it’s a hunch.

Those 3 weeks went slowly, really really slowly. Nothing changed in my symptoms, the usual pain, aches, burning, headache, sleepless/restless nights which clearly exacerbated everything. I was becoming more agoraphobic and unsocial and more and more miserable.

We went back to see the Consultant, the straight face, serious man…. He told me that I had next to no Vitamin D in my body. And after that I don’t remember what else he said, except he did tell me what I wanted to hear which was I had fibromyalgia and chronic fatigue syndrome. Strangely music to my ears, it meant that I could now figure out how to manage my diagnosis and try and get over the damage of being told it’s all in my head. He went on to tell me there was a pain management program at the famous Royal National Orthopaedic Hospital but it was very hard to get on the programme and could take up to 2 years. He put me on a very very high dose of Vitamin D for 8 weeks to help with my muscle pains (it did ease things for me). And he was to refer me to see a pain psychiatrist. My initial reaction to that was worse than that of the diagnosis. I was totally against it and refused to believe that I had a mental health disorder and was crazy in the head! I was told to think about it, and he decided that he would put me back in the NHS System to see him there and put me on the program waiting list.

In a strange way, I think the diagnosis eased some of the stress, it was a relief to be told that I wasn’t crazy and it wasn’t all in my head!

I now had to make the most difficult decision of my career, and that was to retire from being a bodywork therapist. All my hard work, years of studying, efforts to build my practice. I actually remember how hard it was telling some of my most loyal clients. I remember feeling beyond emotional. I’d replay the conversation in my head beforehand, so I was prepared, and every time I thought about saying those words “I’m having to stop work because of my pain” I would well up and cry. I did in fact cry having to tell all my clients that I was stopping work.

So that was that, now it was time to work on myself for a change. That was the end of 2013. The next big thing was going through the process of getting onto the pain management program at the RNOH, and figuring out how to live with fibromyalgia

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