Have you tried...

Earlier I wrote that I hate getting medical advice from ordinary people. Any sentence (let aone conversation) where the opening gambit is "have you tried..." is a non-starter as far as I'm concerned. Not interested. Actually I've noticed that very few people can take in the complexity of my illness. They tend to latch onto one symptom and ask about that. For the first 3 years people would ask about my hands.

"How are your hands?"

"My hands are fine. I've never had a problem with my hands. What hurts are my elbows, upper-arms, shoulders, my back, my neck, and more recently my hips, and thigh muscles."

"Oh...."

Then the next time I see them.... "How're your hands?"

The other thing that people can relate to is sleep. I've often in an advanced stage of sleep deprivation and struggle to know which way is up. So then I'll get:

"Sleep OK?"

"No."

"Oh."

"Sleep OK?"

"No."

"Oh."

etc for weeks on end...

I stopped joining my housemates for breakfast years ago. (besides they eat loudly which disgusts me)

I know it comes from concern but somehow concern for me gets tangled up in their own views of the situation. They'll ask my about a headache I had 3 days ago.

"Head OK?".

"What?"

"You had a headache..."

"Yes, on Monday I had a headache, it's Wednesday now. You saw me yesterday and I apparently did not have a headache then either."

"Oh".

It's like somehow humans lose the ability to communicate effectively with me because I'm in pain. They focus on the pain that they can relate to, and forget to relate to me as a person. Or something. Fucked if I know really, but it's frustrating. I know I'm grumpy and that doesn't help. So what is wrong with me?

Pain in the tendons around my elbows, the ends of my deltoid muscles and all of the muscles/tendons around my shoulders and shoulder blades. Pain in my mid, upper back and neck. Pain in my jaws. All of my muscles are quick to fatigue and slow to recover.

When I say pain it varies. It can be burning with aching (as now), or just a dull ache, or a deep unsettling ache as if in my bones. It can be sharp frightening pain as bad as any I've felt.

Frequent headaches. Migraine. Insomnia - trouble getting to sleep and staying asleep, early waking. Un-refreshing sleep. Restless Legs Syndrome (RLS). General fatigue. [I also have problems with my teeth, psoriasis, I'm obese - sounds attractive doesn't it?].

I have trouble concentrating and remembering things (I used to be clever). I am constantly anxious, sometimes to the point of paranoia and panic attacks. I experience repeated bouts of clinical depression with suicidal thoughts (I took an overdose in 1999). I'm given to bouts of (mostly internal) rage.

Along with all of this my marriage ended. I lost my job. I'm stranded on benefits in a foreign country. I'm unable to do things like play a guitar (after 25 years of it being one of my main interests). I've had many diagnoses such as: Major Depression, Borderline Personality Disorder, Fibromyalgia. Many people want to label me with Chronic Fatigue Syndrome - again it seems to be what they've heard of - and they're like people who's only tool is a hammer: everything starts to look like a nail. Though Mr Gupta acknowledges that the two conditions are different (there's no suggestion of a viral trigger for FM as far as I know) there may well be a similarity in the underlying causes - i.e. a badly trained amygdala.

My last girlfriend left me because I apparently complained all the time. But the cow was forever asking me what I was thinking about or feeling - every five minutes like a five year old "what are you thinking about?". I think about pain, I feel pain. That's about it really. She kept asking, I kept telling the truth. I'm glad she's gone.

I started off today thinking I would list the treatments I'd tried (other than recreational drugs and alcohol in my youth which didn't really work either). I trained in the sciences so I don't have that much time for the airy-fairy stuff - I have tried a few alternative treatments and they have one advantage over drugs. No side effects. However they have had no effect what-so-ever. To date I've tried:

Antidepressant drugs, anti-anxiety drugs, anti-seizure drugs, anti-inflammatory drugs (now I'm a bit anti drugs). TENS, exercise (swimming, yes), stretching, heat packs, hot baths (with and without bath salts), hydrotherapy. Homoeopathy, acupuncture, kinesiology, vitamins, massage, deep tissue massage, shiatsu, osteopathy, active release techniques (McTimoney chiropractic). As a Buddhist I have been engaged in meditation, mantra recitation, prayer etc. In the last 10 years I've had 6 years of intensive psychotherapy - the Karuna Institute, psychosynthesis, body psychotherapy (disaster!). I started but could not finish a mindfulness based stress reduction course (the techniques activated my RLS and just made me worse, a lot worse).

At times some or all of these provided some short term relief. Nothing has made any long term difference.

Now I'm doing Tai Chi and the Gupta Amygdala Retraining Program (ARP). The Tai Chi is very helpful - grounding. Helping me with body awareness without sending me into the twitching hell of RLS, and without demanding the gut wrenching (for me) introspection of meditation. Getting onto the ARP has made me aware of some things. Firstly the grief of the last 4 years is massive and I'm not over it. I'm also terrified of getting a little bit better and then being thrust out of the system only to fall over and go through it all again. I had given up all hope of being well. It's so stirring to think I might get well - I swing from exhilaration to despondency. Big plans, to realising that nothing has helped in the past - or at least nothing has made a permanent difference. I've got slowly worse over my adult life. I'm operating at about 25% of what I might at the moment in my own estimation. It's very early days. I suppose deep down I do want to be well, but I'm terrified (really fucking terrified) of failing again. I was just coming to accept my situation - I'd stopped struggling so much, and was calmer. But now it's all up in the air again and I feel very anxious about it.