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So: PAIN! I have middle/upper back pain, and have had for the whole period of my illness (9 and three quarter years) and this is accompanied by tension in my shoulders and neck. More recently this has stepped up a level and i now have very frequent headaches, where my whole head, jaw (TMJ), forehead, neck, shoulders, upper back etc etc are very tight and tense and very painful. I have found some medication that helps but am not keen on just taking it every day. I use a tens machine on my shoulders (you can’t use it on the neck/head), and have a heated wheat-bag around my neck or balanced on my head most of the evening… this has been going on for over two years, but has gradually become worse and more frequent, so that an evening where i do not feel this tension seems like a real special occasion! My back is also very noisy(!) – i wear ear plugs in bed and this means that i can hear internal noises more than external, and when i turn over it is like several castanets going off at random click click clack…

So i have been trying some alternative therapies. When i found out i had POTS recently someone (cusp) commented that cranial osteopathy can help, and i also read that somewhere else, and had had it before years ago when i first got ill, so knew what to expect, so i managed to track down a place nearby that offered it and rang them. I was told that the first session would cost £75, and that further sessions would be £42. I could get 20% off the first session by signing up to their emails, so that makes the first session £60. I hung up and had a think… it is more money that i have ever spent on a therapy, but it’s the only place that does it nearby, if it works it is worth it, and after the first session it is more affordable, even if not cheap. I have only really had one alternative therapy before (apart from massage, which is always nice) which i can say was definitely worth it and produces real benefits/results and that was acupuncture. I can no longer get to see that person as i had to drive there, which i became unable to do with any certainty, and would feel unsafe on the way home in particular. (I have not found anyone who will come to my home). I have never regretted spending that money, and i thought that considering how bad things are, it may be worth giving this a try. So i rang back and booked in.

I went there on the bus, as it was only ten minutes away, both bus stops have seats of a kind, and a taxi (the preferred option) would have added to the cost. When i got there i was faced with a very large flight of stairs. This place is primarily a physiotherapy centre and the more i think about it the more incensed i am about their lack of accessibility. “Got an injury? hobble up these stairs for therapy!” hmm, nice attitude. The staircase is very fancy (solid wood) and very wide, so there is ample space for a Stannah Stairlift, or escalator, if not a proper lift… the amount they charge (and the fact that they are a company at more than one location, not a tiny business) it is shameful. So i dragged myself up the stairs and approached the desk (again very sleek with no chairs anywhere nearby to rest on) where the receptionist (who herself has ME and should be “standing up” for these things ha ha) dealt with me and eventually showed me a chair.

The therapist was very nice and seemed very knowledgeable about ME and made some good observations of my physical state. The therapy also felt good, like a gentle stretching dance, lying down. My back and head were much more painful the next two days but i saw this as a good sign. As i left however i learnt that the next session, an hour, would cost me £75! From the description the receptionist had given it has seemed as if the other sessions would be £42 for an hour, but apparently that is if they are half an hour. It makes sense when you think about it, but i am not always quick on the uptake these days, and cannot believe how much it costs! Also she can only do Tuesdays, which is not very convenient, as unless i want to walk the dog and go out on the same day (which i try to avoid, for pacing reasons) i have to find a day that my partner is going to be home to do the dog. Also, i expressed concern that they have a “pay if you cancel within 48 hours” policy, and my therapist said to tell reception if i need to cancel that i should not have to pay, but that if i don’t say i will be charged as it is an automated system in another office. I don’t want to be in a situation where i feel i have to push myself to go when not well, and therefore not benefit from it anyway, or end up paying for nothing… Suddenly it is all getting complicated!

So since then, (as the next appointment she had was for three weeks later) i have been researching alternatives… Yesterday i had a woman come to the house (people who do that are very few and far between i have found) who offers Spinal Touch, Reflexology, Indian Head Massage, other massage etc etc. I had Spinal Touch, as the description sounded similar to cranial osteopathy. This woman charges £25 per hour – hurray! She actually stayed for nearly an hour and a half yesterday as was explaining all about what she would do before she did it. It  was “interesting”!! It was not very relaxing, even after the initial explaining everything in minute detail which i found quite draining to concentrate on. I had to stand next to a plum line and was drawn on with a felt pen, then i lay face down and she worked on my back, but not in a massage way, literally just “touching” and a bit of rubbing on certain points with one hand, while the other hand was basically a thumb pushed into one buttock crease (on the inside – bordering on very intimate!) as like an earth wire. The energy from my dodgy vertebrae is supposed to to go up her arm across her shoulders and down the other arm back into my “meridian” (or bum as it is also known). Also i had to give constant feedback about each vertebrae and how it felt, when it felt better etc, so not even very relaxed, which to me is a large part of the benefit of alternative therapies, that deep relaxation. On the other hand, maybe my back and shoulders feel a bit better today. I am trying to see how they are over the next couple of days before making a judgement, but it was a bit too weird for me, the more so when i look back on it! It is based on ideas of acupressure and chinese medicine (flows of energy etc) as well as other things, and after my good acupuncture experience i am trying to have an open mind (but not being very successful). If anything it has just confused me more. I am thinking i will give it another go next week and then maybe get an indian head massage or back massage (she may combine – seems quite flexible) and see if my head tensions ease at all with a bit of attention.

So there we are. Cheap and convenient, or expensive, inconvenient and possible more effective; but who knows?

The third option which i may try anyway is Amitriptyline, which the ME/CFS specialist suggested may help me when i saw him on Thursday. It annoys me that there is never any discussion of what is causing all my muscles to tighten a vice-like grip around my upper body day after day, or what i could do to ease them naturally (exercises, stretches, better posture…) but i should know better than to hope to get anything more than the “tablets for symptoms” approach on the NHS. I can see why so many people turn to alternative therapy, i am just wondering (as i don’t know what is causing my problems) if they can ever do anything more than give a very temporary relief, as the underlying causes are still there, just as they are with the pharmacological “solutions”.

Ho hum, these things are meant to be relaxing not create more stress! Decisions are not my strong point these days…

p.s I am going to cancel the next cranial osteopathy appointment (NOW!) and complain about their stairs again… i feel i shouldn’t go back just on principle 😉 it’s just not good enough!

Yesterday i had a good appointment with my specialist and he is writing me a report which will hopefully be thorough and supportive of my DLA claim and make it worth going to the appeal tribunal… he asked to see the DWP medical report in order to criticise it and correct any incorrect assumptions, so that is looking promising.

Then, this morning the tribunal papers came through in the post, so i have another little form to send back in the next few days, if i want to continue.

I am getting quite concerned now that it is getting closer and more real, that i have not got representation. I have been reading other people’s experiences, talking to people who know about these things, and the consensus seems to be that without representation it is a nightmare and they can rip your argument/statements to shreds in seconds… i was told by Welfare Right Service when they said they could not take my case on, that the tribunal panel will go easier on me because i am representing myself, but i am not convinced. Either i meet the criteria or i don’t, but the thought of having to be coherent and consistent for 45 mins to one hour about details of my condition, what i am capable of, what i can’t do etc, particularly with a fluctuating condition as mine, fills me with horror. Particularly after the experience of the DWP medical i had, where i just felt so ill from the effort and stress of going that i could hardly walk/speak or think clearly and it was so traumatic that i spent the next 8 days largly in bed recovering… the tribunal is certainly a more stressful thing and i think i need help.

I have emailed the benefits adviser who helped me with the form to ask if there is any chance Welfare Rights will change their minds, now that i have more evidence from the specialist, and where else to find a representative if not. Of course i will have to find these for myself, but no harm in asking. I think i can ask the Citizen’s Advice Bureau, and i think you can even take a solicitor, although i would have to pay for that i imagine…

So, still lots to sort out for DLA, and no sign of it being over any time soon! It would be nice to have it done before Christmas, as it has been hanging over me for so long.

Took the dog out the other day and saw a mouse!

It was so tiny! I was taking a break on a handy bollard (not nearly enough benches in my village to cater for my needs, so i just have to make do) and it just scampered about for ages right next to me on the side of the main road. it was so small even the dog didn’t notice, she just munched some grass as she often does when i stop walking…

This may seem unimportant but it made my walk actually pleasurable, which is happening less and less as i find it so hard, and it is nice when you don’t have to go trekking in the undergrowth or up a mountain to see wildlife! As i tend to stay in a five minute radius of my house it is nice to see something different.

ME/CFS Awareness

ME/CFS Awareness


October 2008