Pain and therapy… update!

(this post follows the last)

So, i had another Spinal Touch session the next week and it still felt weird, although she did some Reiki at the end which made me very warm and was nice. I am not keen on Reiki as i am a bit sceptical about it as well as having had a free session once at a festival which was a nightmare! The woman heard i had ME then decided to tell me exactly why and what i should do about it (yes you guessed it, i just need to do xyz, look at my childhood, communicate more, de-stress, etc etc). So anyway, i let my therapist do a bit of reiki, as she was so keen, and it was relaxing and pleasant enough…

The next week she gave me reflexology and auricular (in the ears) acupuncture, which was really good. Firstly i was fully clothed (always a bonus, especially this time of year) and the acupuncture points we chose were specifically for tension headaches, which included a point for TMJ (jaw joint), muscle release, tri-geminal nerve, forehead, etc etc. i definitely had less severe headaches that week, and only took my painkillers twice. So i had that last week as well and although i am still having tension and pain it is not developing to quite the same level as it was. Next time she is going to do the acupuncture and an Indian head massage to get hands-on with my neck and shoulder muscles. I can’t wait!

The other thing that may be helping is that i am having dog walkers come much more. This week i am only walking the dog once (did it yesterday). Last week was quite busy and i ended up having them come three times and it made such a difference as i was not feeling very good and walking the dog would have pushed me over the edge! It has been making me feel so ill and using all my daily energy for some time now and already i feel a weight has been lifted from me. I will definitely continue to get their help from the next few weeks as it is really good for her (the dog) to get an hour’s walk in daylight hours as my partner leaves and returns home in the dark now, so cannot take her as far as she would in the summer mornings. Also this week with the fireworks going off it has been extra-useful as the dog is too scared to go out after about 3pm, so a good walk before that gives her chance to do all her business and have some fun before the traumas begin… I am so lucky that we can afford to do this. The dog walkers i have found are cheaper than the one we have used a few times before, but it still adds up over the weeks. I am trying to remember that my health is worth it and not to feel bad about the extra expense. (It is cheaper than a mobility scooter which my Mum was told/lectured recently, when she went into a showroom to enquire, should NEVER be used to walk dogs!). I am hoping that doing less walking and having some regular therapy can make some small improvement and make the winter seem less long and depressing than it did last year…

I am also hoping that the POTS speacialist will perhaps give me some treatment which will make standing and walking easier in the future. My appointment is in about three weeks! I know i should not hold my breath…

pain and therapy

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!

Hot Stones Massage

This afternoon i had my first Hot Stones Massage. It was really good! I had it done just a few doors from my house, so not far to stagger home again and it is on special offer – £30 for all of August (usually£45) - and it lasted nearly one and half hours!

It was really nice because it covered practically my whole body and i was amazed by how many painful and tense areas i had – i knew my upper back, neck, scalp and shoulders were bad as i have been in quite a bit of pain and had daily headaches since coming back from the festival as it was hard to care for my posture when away from my usual chair, bed and travelling etc. – but i was amazed by how bad my leg muscles were and also in the bridge of my feet. My upper arms were also very sore. I knew my head was tense and i could have done with another half an hour just focussed on that, but apart from that the massage was very focussed where it was most needed… So i have booked another one for the same time next week i can’t wait… i think that two in a row will mean that things have chance to improve much more: cumulative effect! I am going to try extra hard this week to keep my newly massaged body stretched, relaxed and massaged where i can to keep up the momentum!

The stones were really nice – they start off very hot but cool quite quickly so the person keeps leaving to swap them over so it is not like a normal massage where the hands barely leave you for the whole time, but you are left with the heat of the stone in-between times so it is still very relaxing. The stones are rubbed over you quite gently but it is supposedly the heat which penetrates into the muscle and releases the tensions. My back would not even click when i sat up and felt amazing, so i think it definately works! When she had done each foot she placed three little stones between my toes! That made me laugh – she said that quite a lot of people’s toes can’t hold them in place… a talent i didn’t know i had! Also after doing my arms she left a large stone in each hand, which was nice to hold.

Since i went to Scarborough i have had a new perspective on alternative therapies – i have tried quite a few before, but went through a phase of thinking what is the point, as however nice they are, none will ever “make me better” and you can spend so much money on them – but when in Scarborough and having a treatment of some kind each day i realised that the value gained from something that helps you to relax, takes you away temporarily from reality and gives you a sense of well-being and makes you feel good can be immense and although may not heal you in any absolute sense, can contribute to positive change on some level, even if it is just in mood. If it can help shake these tension headaches away i will be happy as i am taking painkillers every evening and i don’t feel comfortable with that for more than a couple of days in a row, but have had no choice lately. Obviously i can’t keep having a massage every week, but i think it is good to know it is there for when i really need it and so convenient being on my doorstep… roll on next Tuesday!