UPDATE 16 Oct 2009 – As I write this update the last modified date on this page is 16/5/05 and I highly doubt that was an update in page content. This page is therefore largely historical and I am quite pleased it is still here. At last ME is 80% a thing of my past. When I get chance I will write an article on my recovery but in the meantime I will mention that I have made progress by changing my thinking patterns and the use of self hypnosis. Can I recommend that once you have checked out my views here you jump over to my hypnosis website and specifically start looking at the articles in the ME/CFS section . If you are reading this in the North Essex area and know someone with ME or are a sufferer yourself please get in touch with me as I am offering free help. It is free and there are no catches. I want to help stop the unnecessary suffering and help people live fantastic lives again. I am like a new person and there is no reason other sufferers can’t recover from this very physical illness too.
I have noticed there are several pages offering advice on ME on the net. I have decided it is time for me to add to the information or lack of it by describing my case and what it feels like. This isn’t a well written page and it’s views should be taken with a pinch of salt. If you think I have it all wrong please feel free to tell me.
What is M.E.? Why do we have to start with such a damn hard question? Well lets start with my simplistic answer of what it is like having it. It is like having the flu but instead of it only lasting two weeks the aching and tiredness last for months or years. It is also like a running a marathon before you wake up in the morning and then being asked to do everything as normal when you do wake up. In my experience your strength is as good before you become ill with ME. Short term. Very Short term. That is the problem you have no endurance.
ME itself stands for Myalgic Encephalomyelitis. It is a name that started to be used in the 50’s apparently. The illness has been around a lot longer than that though. Technically it means “Inflammation of the brain and spinal cord” but I don’t think any of that is proven and it is not relevant to the symptoms. In America it tends to be called Chronic Fatigue Syndrome (CFS) which is better in that it describes how we feel better but it also describes a load of other illnesses too. Another name used is Post Viral Fatigue Syndrome (PVFS). I don’t think I have any problems with this one but I suspect there are some since ME sufferers still prefer ME. ME is now officially recognised by the World Health Organisation which is a help. In the UK a lot of doctors still don’t believe it in though and this causes problems for the suffers. The name “Yuppie Flu” which was used in Newspapers in the 80’s is also misleading.
So what are the symptoms? Well in my experience if you compare any two ME suffers their descriptions will match in only 50% of the things. (No wonder doctors struggle to cure us!)
I will give you the Action For ME view of Diagnosis
Diagnosis is based on a careful history and examination and exclusion of other conditions. It can be difficult to distinguish M.E./PVFS from other forms of chronic fatigue but, for a diagnosis of M.E/PVFS to be made the following characteristic features must be present: –
abnormal fatigability: the severe reaction, sometimes delayed up to 72 hours, to either physical or mental exertion trivial compared to the patient’s previous tolerance. Patients can take days to recover. The fatigue is unlike ‘healthy’ fatigue previously experienced.
encephalitic symptoms: especially poor concentration, short term memory loss and disturbances of sensation.
variability and severity of symptoms: from day to day or within one day, sufficiently severe to reduce daily activities significantly.
duration: symptoms should be present for three months or more, unlike common post viral debility following ‘flu, glandular fever and hepatitis.
chronicity: a tendency to become chronic over months or even years. It is also important to distinguish M.E./PVFS from the fatigue associated with depression and lack of physical fitness.
How did I get ME?
I was one of the lucky ones. I had a very clean start to the illness. So ME sufferers can try and fight it for years before getting diagnosed something was wrong.
In January 1994 I was travelling to work from Ipswich to Tunbridge Wells. This is a distance almost exactly of 100 miles and I was doing it daily. I driving 25 miles to a friends house in Colchester and then getting a lift in his company car to the edge of Tunbridge Wells where he was working. I then did the 1.5miles to the office where I was working on Bicycle. It was a long day but because I wasn’t driving for 75 miles it didn’t bother me.
On 24th January 1994 I woke up feeling a bit rough but I didn’t have time to consider how well I was. I drove to my friends in Colchester and was feeling pretty bad by the time I got there. My friend said sorry he wasn’t going to work today he wasn’t well. If he had done I would have gone in but there was no way I was going alone. I might not be well enough to drive back by the end of the day. I decided to go home. My friend was horrified when I told him he thought work would think we were taking the Mickey out of them. I had made the correct decision though as I went into my usual 3 day flu cycle of Shivers and Delirium on the first night. The next day feeling a bit better. The third day thinking perhaps I ought to be back at work but being advised not to. Then on the fourth day my ex-wife became ill. I therefore booked a day off work and looked after my daughters while she recovered. On the Monday I went to work again but felt heavy legged and the early signs of my 3 day cold reappeared. The next day I had to go to the doctors and they signed me off for a week with Tonsillitis which amused me somewhat as I have had my tonsils removed.
On February 7th I had bad Diarrhea and Stomach upset. A Doctor was called out for me at 10pm. This was a different Doctor.
On 14th February I had yet another Virus and was signed off another week. I couldn’t believe this and during that week I got a bit fed up and Depressed.
On 21st February I saw yet another Doctor in the Practice (I didn’t care who saw me) She said it is all in my mind and should try going back to work on the Thursday and do short week. She also thought I was worried about journey of 100 miles each way to work. This really annoyed me so thought why wait till Thursday I will go in tomorrow and I will stay in Bed And Breakfast accommodation so that can’t be used against me. So I did just that the first day felt very drunk and heavy legged and worked
all day. My Bed and Breakfast was 200 yds from the office and by the time I got in the 2nd day I felt like I was sky diving. I didn’t feel it was safe for me to risk going home by train so I called my wife to come and fetch me from work. Curiously I can remember one of the administration assistants saying to me she had heard I had “Yuppie Flu”. I hadn’t a clue was it was. She told me someone else had had it in the office and had been off for months. I laughed and said no I haven’t got anything like that!
When I got home I saw the doctor I decided to stick with and he referred me to hospital for check ups (all negative). At this point I was told I had probably got “Whatever it is that goes under the name of Chronic Fatigue Syndrome or ME if that’s what I want to call it”. I would be better in Six months or it would be something else. Six months I could not believe it! How can they tell you are going to be ill for months! My next Sick Note from the Doctor was for 3 months. I didn’t have to see him and I didn’t have to go to work for 3 whole months. That was terrible. How the heck would I fill my time! What on earth would work think of me!
Over the next few months I found having ME like walking downstairs. I would try and maintain a certain level of light activity. This would gradually get harder and harder until I suddenly couldn’t do it any more I “crashed” and went to a new lower level of activity. I would try to maintain this new lower level and then crash I would crash again and go down another “step”.
By October 94 my ex-wife had talked me into using an Electric scoters in the town centre. Boy! Was that embarrassing. How the heck had I got to the stage of having to use a wheel chair to do my shopping! How was it I even qualified
to use one. In fact calcualting back I must have got my first Orange Disability Badge at this time. Unbelievable in serveal months I had gone from fully fit to disabled and all because of a cold! I was also delaying getting up as long as possible in order to conserve energy for the rest of the day. I tended to spend the afternoons sitting with my legs up on a chair away from my children.
My Ex-wife had seemed to suffer some kind of Post Natal Depression after Abbie was born in April 93 and she was slowly coming to the conclusion I was the cause of her problems. The fact I became ill did not help things one bit. She was having to do more and I was no use to her at all. I tried to save the marriage but eventually had to decided to let her divorce me. I therefore had a lot of stress during this early period of my illness. This is something that if possible should be avoided at all costs.
In June 1994 I had started to make one line symptoms notes and diary entries about the illness by October 1994 I was making a fuller record of my daily symptoms in a diary database on my PC. I almost never read it but I have found that when I do it is an interested look into my state of mind and life etc. I also found writing a diary a great way of relieving stress. I could write things down and look back and see if I agreed with my views in the future. Once I got E-mail I found that an even better way as I could then write something out for my records and share it with a couple of people and get feedback from them on weather I was a fool or whatever. Doing the diary/e-mail was the start of my obsession with writing reviews of Concerts and books etc. Even before ME I had a poor memory so it is nice to see what I thought about something at the time.
By February 95 I could no longer handle sitting for any length of time.
In March 95 I risked a trip to town just to see if I was kidding myself about my new level of required in activity and I was finally forced to start taking Co-proximal to reduce the discomfort in my back. I have kept on these ever since otherwise I could not do half of what I do and I would be extremely grumpy and worn out. If I decided to go out now I have also discovered I am allowed to use Ibrufen so I use that to blot my body out even more.
On the 6th April 1995 I got an appointment to see an ME specialist called Dr Elisabeth Dowsett. She worked voluntarily at a clinic once a week but had been looking into ME for years. This was an extremely helpful meeting in that it confirmed I had ME and what my plan of action should be etc.
“So you feel tired do you?” I hear you say. “Well I feel tired too.” Really so where do you place yourself on this scale?
Percentage disability – Symptoms
0 – No symptoms
10 – Mild symptoms following physical or mental exertion
20 – Mild symptoms at rest, worsened by physical or mental exertion
30 – Mild symptoms at rest with overall functioning only 70-90% of usual
40 – Mild to moderate symptoms at rest, daily activity clearly limited
50 – Mod symptoms at rest, mod to severe symptoms following physical or mental exertion, unable to perform strenuous tasks
60 – As 50%, plus overall activity reduced to 50%- 70% of usual
70 – Severe symptoms following phys or mental exertion, 50% of usual activity overall, Mod to Severe symptoms at rest.
80 – Unable to perform strenuous tasks, rarely able to leave the house, confined to bed most of the day, mod to sever symptoms at rest
90 – Severe symptoms at rest, bed-ridden majority of the time.
100 – Severe symptoms on a continuous basis, bed-ridden, constantly
My current status is I am mainly bed bound but I find my interest in E-mail allows me to do around 2-3 hours of replying a day despite the discomfort. I always print of most of my E-mail for reading. I write answers on the paper and then type them in to save time sitting. I am in general limited on how much I can read. I decided I would finish a book that I had been reading a year and still had 60 pages to go. I did it over 2-3days reading no more than 6 pages at a time and strained my eyes muscles vertically so much that I woke in the night in total discomfort. I used to read a lot of musical mailing lists and newsgroups but I have since decided that reading books is more enjoyable. I therefore tend to use my Bath reading session for books.
By day normally starts between 6.30-7.30. I am always pretty desperate to go back to sleep by 1pm. I normally sleep for about 30-60mins and then go have a bath because in winter I get really cold and this thaws me out. It also delays my activity in the afternoon. In fact I may as well describe an average day for me.
6.30 Wake-up. Download E-mail and start printing it out.
7.30 Go and get breakfast
7.45- Watch the previous nights TV on video until at least 9.30 longer if I can stand it.
10.00 Start reading e-mail with music on at low levels.
10.30 Maybe latter start answering e-mail’s. What I don’t do goes into backlog and only gets tackled if I ever feel up to looking at it. I think it more interesting to answer current e-mail first as it is fresher. I have also discovered there is an art to managing E-mail. Friends that reply too quickly I have to let go into my backlog occasionally and only reintroduce them when I am getting low in e-mail’s.
12.00 Eat Lunch
15.00 Watch TV
15.45 Keep watching TV. Perhaps do some jobs but not to much. See my children if it is one of their two visits a week.
18.00 Pick up and answer E-mail till 7 or 7.30 then watch TV. I have recently got an Electric Saxophone. It is fact called Yamaha WX5 Midi Wind Controller. I used to play Sax and Clarinet as a child and have wanted an electric one ever since I discovered them because I am a hopeless musician and don’t like inflicting my noise on others. I play 30mins to an hour an night (when I am not too wrecked!). I do this laid on the bed. I can’t waste energy sitting for it. It absolutely messes my brain up. It is totally
wrecked for an hour to 2 hrs afterwards. It is not at all advisable to me to risk practising earlier in the day because of this. I therefore tend to practise when there is nothing on TV or something that is light on the brain like a soap. I used to not be able to multi-task and I still think that is pretty much that case but I do seem to manage a little double tasking in this case. And sometimes with scanning my e-mail on paper too.
Maintaining this level of e-mail is hard as my fingers get worn out. At times in the past I have had to resort to using pencils to type. I also suffer with light. I don’t seem to be like other people in this respect as it is contrasts in light that get me. Artificial light sources have to be out of my eye sight. I often have to shut the curtains or reduce my angle on the window because the light entering my bedroom via the window is too strong compared with the light in the rest of the room. People just don’t understand this. I also always have to play with the brightness and contrast on my TV set.
I used to suffer with noise but since I moved back to my parents I have found my toleration for it has increased a bit. When I am crashed though I still jump and can’t stand loud noise. I am now pretty much an expert on when I am going to crash and how to avoid it in the short term. If I do misjudge this and crash for no real reason I find these crashes are the worst that can last for over a week and drive me nuts. Lets face it I do very little anyway so cutting back and still filling
my time is even harder.
I consider myself as having been on the same level since I became mainly bed bound. Looking back at my diary it is conceivable that I might have improved slightly. I don’t believe this myself. To me this is down to the fact I am not being worn out by playing with my children. I know this looks bad but I feel sure it is true. When I was still with my Ex-wife I played with them for 1/2-3/4hr morning and night. I was crashing all the time then. I could never recover. When I moved to my parents I saw my children 3 times a week for 2.5hrs and I crashed a fair bit. It then got cut down to twice a week because Zoe had to go to school one of the times and wanted to miss it because Abbie was still seeing me and it was therefore unfair. (At the time it was actually quite handy having Abbie alone one session as Zoe being Older and therefore able to do more kind of dominated the computer and my time. It allowed me to teach Abbie a few things without having to worry what Zoe was doing. That is something else actually. I found it best to encourage them to play separately one on the bed with me the other on the Computer. That way they didn’t fight as much and I could be more one on one with the one on the bed. If they both did the same thing they would both talk at once and I really struggled. Anyway ..)
Moving down to two sessions a week has been perfect. I can now do slightly more activity to keep me sane and be in a fit state to play with the the best I can and I am not crashing unless I go to a concert or some other extreme activity such as deciding to write an ME page for my web site. I will end up doing this all in one session so that I can get it down. Suffer for it and get recovered. If I do it over several days I will never switch off from it and it will become a bind. I have started the page this morning because it has been in my mind to do for some weeks and my E-mail has been down overnight. I also am not seeing my daughters for another few days so I don’t have to worry about being tired for a few days.
Just to prove my point I have had my lunch and been trying to have my nap which I need badly but I lay there with my eyes shut etc and my brain is ticking over thing about everything I should write on this page.
I am a Computer Programmer or should be. I occasionally have decided to write a program on my PC. This is far to addictive for me. I could set myself 1hr to do a job but if the job is not finished I will never switch off from it. Therefore is no way I can be tempted by programming an hour a day for a week or something. It is far better to do it for 7 hrs in one session and suffer for it. I recently bought a Psion Hand held computer and that can be programmed. I started to write a game on it. I was doing it is stages so that I could switch off but I still ended up attempting too much in a week and on one particular problem I ended up working out
it until 3am because it was annoying me and if I stopped I would get another idea as to what I was doing wrong.
From Mid 94 onward I have found I need to sit in chairs with my legs stretched out in front of me. As I sit here typing this I have my feet up on my desk because that is the most comfortable method. I also have a back cushion on my chair to support my lower back. I have never worked out with I like it or not. It is always uncomfortable. However I occasionally go to London on train and I there have been several times I have asked for someone’s empty drink bottle so that I can lean on
it. I have also used jumpers and coats etc.
To show you how ME affects the brain how hard do you think it is to write down an address someone is reading to you on an average day when you are not feeling crashed? It is amazingly hard for me. I find it a really hard process to convert the sound of letter into the mental image of a letter and then get my hand to write out that letter. And it really frustrates me when people say “double f” or something. “Double?, Double? What letter is that. Oh yes what is the next letter.” It takes a good second of hard thought to convert each sound to a written imagine. I have also noticed if I am typing out E-mail responses for an hour or more and the phone rings it is really hard to get my brain to switch back to vocalising my thoughts instead of typing them. It is as though it gets into the habit of working certain parts of itself and switches off all the lights in the unused areas.
It is extremely hard to describe how you feel when you are crashed because your brain doesn’t work so you don’t know how to explain how you feel. One thing I have noticed several times is I become “fragile”. Sensitive to sound and light. I am often feel my eyes are puffed up and I am bug eyed in appearence. I feel shakey. I bump into more things. Over activity often gives me a sore throat. It is one of the few occasions when my brain is happy to do nothing. I am often rather cuddly in this case.
I have also noticed that there are occasions when I have felt depressed during a crash. Now I have tried to explain this in the past and never succeeded so I don’t expect to succeed now. I am not feeling depressed because I am crashed. I do occasionally get fed up with long crashes but that is not what I mean. I go into a crashed state and I find my brain seems to be lacking something and it feels depressed separately from how my mood is. In a crashed state I can be watching TV and there will be an emotional moments e.g. two friends kissing, a child dying, people making up and I have to stop myself from crying. My face starts to crack.
Anyone that knows me no I show no sign of depression at all. Some people with ME do and it is to be expected with any debilitating illness. I have had a fixed plan for recovery since I saw Dr Dowsett and am very positive. I would for instance rather have ME than Cancer. I view the use of Electric Scooter in Town as going for a ride on a Go-Cart. I view using a wheelchair
as a visit into the land of the disabled. Aren’t I lucky that I don’t have to be in it all the time.
The hardest thing with ME is learning to hold back. I live a cross the road from a Park. I see people go running in it. I used to do that and I want to go and join them. I want to do this and I want to do that. I know what is possible and I know how far I can push the limit. Because I used to run long distances I have always been good at endurance. I can switch off how my body is feeling and keep my brain occupied with something else. With my daily load of activities I always feel I am pushing the limits of what I can do. I am on the knifes edge if not hanging on the wrong side of it by my hands. I firmly believe that for me to recover I should keep as active and happy as possible. I base my day around doing things that keep my brain occupied and use as little energy as possible. If I do things that I don’t enjoy they are ten times as hard to do as things I do enjoy.
Is this because I am selfish? No it is because I am in pain and tired. If my parents go on holiday I have to heat my own meals. I also tend to use the stairs 6 times a day instead of the current 4. I really notice the difference in my fatigue levels. The 20 minutes waiting for potatoes to boil are a real problem. Do I lay on the kitchen floor for the time? Continue the process of loading or unloading the dishwasher? Do I risk the gas going out or something boiling over and go and lay on the settee for a while? It’s a problem. I almost never do the later as it is 20 paces away and therefore more walking. If mum and dad came back early they would have a fit if they saw the state of the house. I have things lined up and the top and bottom of the steps. Things lined up to be taken to the bin if I should ever need to go that way and other labour saving things that make the place look untidy.
If I am on a burn out day i.e. I am pretending to be normal for the day and don’t mind the consequences. It is extremely dangerous for me to stop. E.g. During the summer I like to take my children out to a Bouncy castle play area type place. This is good fun. If join them walking around after an hour I would be really struggling to keep going. If I stopped and rested that would be it. I would never get going again for the rest of the session. If I continue to push on I can normally make it. I discovered this when I was running once when well. I decided to follow a country footpath and see where it came out and then run home. I had done about 13 miles and was 3 miles from home and noticed my shoelace was undone. I ran with it for a while until I was running downhill and then did it up. I was disgusted to find no matter how hard I pushed myself I could not get back into running again and had to walk all the way home very annoyed with myself.
I do have a great capacity to endure my body. My girlfriend visited during the summer and we did an awful lot. I was able to do it because I was supermotiated and supertired. Everyday I woke up and wanted to get on with the day i.e. get up and get out. I needed the distraction. If I did a day with loads of walking I had to try and take it easier the next day on a coach trip or a light day. As long as she was around I was able to cope. She wanted to go shopping in London and there didn’t seem any point in my hindering her so I had a day alone by myself. This was an extremely depressing day and totally pointless from my ME point of view. OK I did get some benefit from resting but not a lot and in the mean time I was feeling my body and therefore sorry for myself all day. It took a good week after she left to even start to feel normal again. Even then the slightest over exertion and I was crashed. It took weeks for me to stablise and get back to more normal level of activity again. Physiotherapists and concerned onlookers would say isn’t great you did so much while she was here. You must be getting better. It was not the case at all. I was on two lots of painkillers at maximum and determined. My body at the end of it was well into it’s reserves. Certain Doctors think
all that exercise should have made me better able to cope with my daily load but in fact it reduced it.
Another point I feel I should mention is I can agree to go out for the day without out a wheelchair and know that I might walk a mile or something ridiculous. (Remember I feel the distance after 20 yds and that my legs feel like I am walking on pins. My Shins specifically.). If halfway through the day someone I am with wonders away in what I perceive to be the wrong direction or unnecessarily and I have to follow to find out why I get extremely frustrated and begrudge every single step. I have no object
to doing it if is is necessary to what we are doing or even if we are lost. If it is unnecessary though it is unnecessary and my energy calculator immediately switches back on and says “Look stupid you are hurting your body why?”. To the outsider I am walking 1mile what difference does 20 steps make. It doesn’t make sense for me to be annoyed about it. What they don’t appreciate is that every one of those steps is pure determination and when you don’t have a reason for continuing that level of determination you revert to normal. How would you feel if you had just ran a long distance race and then someone said to you “Now run over there because I am telling you to”
Perhaps it is time to explain the Energy Bank account …
Aggressive Rest Therapy Or an Analogy on who ME works!
An analogy – My attempt (It’s actually partly taken from someone else’s ME page) to explain Aggressive Rest Therapy
1. We all have an energy “bank” account.
2. “Normal” people have a “normal” account. They deposit 7-8 hours of rest, and they can withdraw 16 or so hours of energy.
3. People with ME don’t have “normal” bank accounts. Our banks have very high service charges.
4. We must deposit more rest to be able to withdraw less energy.
5. We get charged a BIG service charge just for having an account.
6. We get charged a BIG service charge whenever we make an energy withdrawal.
7. We get charged a BIG service charge whenever we make an energy deposit.
It’s not fair…not a bit. But that’s life with ME
I had heard all of this before except for 7 the making of the deposit charge. That is definitely true. Trying to rest up in preparation for a know big exertion is almost pointless. Certainly avoid doing too much before it but resting completely doesn’t achieve a lot except drive you mad and make you worried about the exertion coming up! It is like filling an upside down pepper pot through a hole in the bottom of the pot. It is possible to get the water to the top if the water in is faster than the water out but as soon as you turn the water off it continues to drain away.
What is my philosophy on how to recover?
To be honest I have had ME 6 years now and I have a gut feeling this is it for me. I live in hope I am wrong but I have decided to change my life and not take the advice I was given in the early years of my illness quite so much.
Basically I follow the advice I was given my Dr Dowsett in her chat with me and the ME in a Nutshell leaflet.
My Life goal is to be happy (but not at anyone else’s expense) and to keep happy I try and remain sane while listening to my body.
When Dr Dowsett was describing the “How Do Viruses Evade The Immune System?” section of ME in a Nutshell, she said that perhaps ME gets “cured” because one day the virus mutates back into a form the body has previously dealt with and it is therefore able to get it under control again. This seems logical to me. General medicine has nothing to offer ME suffers at present and I have tried several alternative therapies in my time.
Therefore I am keeping happy and sane and waiting for enough time to have passed for my body to beat the illness.
Because I have had the illness a long time I have started to drop the idea of listening to my body. If there is a concert or something I am interested in going to I will now force myself to go. Before it was only essential concerts I would go to. If I suffer for it I don’t mind as much as long as I thought it was worth it before going. I should point out there is absolutely no reason why I would go down the pub for a drink. It is just not worth the energy and suffering. It has to be something special to me like going to a concert or taking my girlfriend out to make it worthwhile.
Even then I have been to some concerts that I wasn’t that excited by and felt my back all the way though. It is really annoying.
If an ME suffer can save energy doing something do it. Conserve every single drop of it for something you enjoy. I type up interviews for my Praying Mantis Web Pages. I used to do it in one day with the PC moved to my bed. I often wondered weather a laptop computer would be better but there is still the weight on the legs as a problem. Or twisting if it is on the bed. I recently got a Phillips Nino which was a handheld PC without a keyboard. I discovered this was great. It was able to read my handwriting and everything. It was slow though. I am quicker with a keyboard. A friend had a Psion handheld computer and the 2nd hand price wasn’t too bad and so I admitted I made the mistake with the Nino and got one. It has been a dream. It is not designed to sit on your chest and be typed in but it is light. I tend to have to prop the use up on a book as a wedge so I can see it laid down but at least it allows me to type while laid down. I have noticed my back hurts more the night after but I can now play games
and write concert reviews, notes and set alarms for activities and TV etc. I would not be without it now. I recommend it for any ME suffer.
Because conventional medicine is not much help ME suffers get desperate and they are rip to get ripped off by alternative medicine. Some people do recover. They might even recover because of the current therapy they are trying if so great. I have tried several things and none have worked for me. It is just tipping money down the drain in my view. People accuse me of being pessimistic if I say “No I don’t want to run round the garden naked and rub my nose on a tree to see if that cures my ME”. It has taken me a long, long time to work out a reason to explain my dislike of these things. Then when my parents were suggesting something one day it occurred to me to ask them why don’t they “do the National lottery”? It’s because the odds of winning the top prize are about 14,000,000 to 1 and they don’t think they are good enough odds. That is exactly what I feel about Alternative Medicine. Yes there is a small chance I am rejecting some marvelous cure but if it is that good I think everyone with ME will discover it and tell fellow suffers it is worth it. Another consideration is there are lots of type of ME. Some suffers are allergic to certain types of food. I am not sure that they are my type of ME and I don’t think things that worked for them are likely to help me.
Aromatherapy Massage – This is one of the first things I tried. My legs were always cramping (of course they were I was too active on them) and my little brother decided to give me two treatments as a birthday present. Well it is was nice and relaxing and I felt my legs loosen but by the time the rest of my body was done they had started cramping again. I highly recommend it with your partner though.
Holistic healing – I didn’t see the point of a second massage and by brother’s friend also did healing. If you slowly bring your hands together from a distance as some point you might find you feel a slight resistance to bringing your hands in closer. That is your aura. A healer massages this and channels energy back into your aura when you are feeling low. I thought “Oh what the heck I will give it a go”. I got no noticeable effect so I didn’t bother again.
Homeopathy – From October 95 to April 96 I tried Homeopathy. I was given several different pills. Non seem to have any positive effect. In my diary I did querying if I was was feeling rougher because of it but I never decided.
Intra – My parents went on holiday and meet some ex-ME suffer that recovered on Intra. They decided I might as well try it. I didn’t have to pay so I didn’t mind. I noticed no effects.
Graduated Exercises – In the first quarter of 97 I got to see a physiotherapist that dealt with ME cases and had a 100% success rate (she claimed). I was started with walking for 50meters every day. I was to build it up to 75m after a few days and 100m after a few more etc. I was only on two visits a week from my daughters at this point so I was not too over-active. I was crashing and having to take the increases a lot more slowly than the Physiotherapist wanted me to. Every time I got to about 2-3mins walking day it was just Crash, crash, crash. I couldn’t do the exercises and my normal daily/weekly pattern. I went back down and rebuilt up again a couple of times and was eventually told she could do nothing for me.
Chinese Herbal Medicine – In August and September 1998 I gave Chinese Herbal Medicine ago. The Doctor didn’t promise results but he was surprised after 8 weeks when he had got nowhere. I am sure he said I was his first failure. This was very expensive 250ukp over 8 weeks. Other customers seemed to swear by the medicine.
St John’s Wort and Multi-vitamins – In April 99 I hadn’t tried anything for a while so I decided to give these ago. No noticeable effects.
Prozac (Not an Alternative therapy in the conventional sense but it is as far as ME is concerned to me) – At the end of 2000 I decided I had been to see to many gig and that is was taking too much out of me. I was feeling like I wasn’t getting anything done at home on my PC etc. I do need to feel I am getting somethings done and that I am organised so I took the decision to not go to the less essential gigs and to try and buckle down more to a proper routine again. In Jan 2001 I was therefore feeling a bit low. I wasn’t my normal happy self and I decided I would go and have a word with my GP. We decided I was just frustrated but since Anti-depressents work for 20% of the cases with ME I would give them a go again. The last time I had tried them was 94/5 time.
I had reacted badly to them so it was suggested I go for Prozac this time. I also decided I would make sure I would give them a longer trial period this time. The previous time I had suffered a load of side effects and only lasted a week or so.
The first week on Prozac I had a cold so I was a bit off my head and didn’t know weather it was the cold or the Prozac. The 2nd week I knew it was the Prozac. By about day 10 was I really wanting to get off them again but I gritted my teeth and decided to get through the packet of 15 I was on. My main problems were my head was completely gone. I just could not concentrate in the ways I normally can. My legs and muscles in general were cramping a lot more and I was very fidgety. I had a dry mouth and I was having to drink even more water than I normally do. (I tend to drink a lot anyway). It also was wrecking my sleep pattern. I was really struggling to keep a sleep a night. I am lucky that ME doesn’t affect my Sleep too much so this was particularly annoying. On the 15th day I therefore went back to my GP and we agreed there was no point in me continuing with them. I hadn’t really had long enough to get the full proper effects of them but there was no point if they were making me feel worse. Having tried them twice I now feel I can say for sure that Anti-depressents aren’t the solution in my case.
If you can’t get out to meet people you might think it is very hard to find companionship. Well the Internet is a great way to get to meet people. They might be on the wrong continent but the can still support you and you them. Also international calls are extremely cheap now. I pay just 3p a minute from the BT network for calls to America with a company called One.Tel (0800 092 1878). Calls are charged a minute and the is no monthly fee or anything. I am sure if I needed to I would be able to find ways of finding someone local to my area but I have no need to thankfully.
I am not at all religious (although I love talking to people that are to find out why they are) however Rick Wakeman used the following prayer on one of his albums and to close his autobiography “Say Yes”. He says it is attributed to an unknown Confederate soldier. Whoever wrote it I think it is a great bit of text and may help some people come to terms with their ME and lives..
I asked for strength that I might achieve;
I was made weak that I might learn humbly to obey.
I asked for health that I might do greater things;
I was given infirmity that I might do better things.
I asked for riches that I might be happy;
I was given poverty that I might be wise.
I asked for power that I might have the praise of men;
I was given weakness that I might feel the need of God.
I asked for all things that I might enjoy life;
I was given life that. I might enjoy all things.
I got nothing that I had asked for;
But everything I had hoped for.
Almost despite myself my unspoken prayers were answered;
I am, among all men, most richly blessed.
The Polio Paradox – Richard L. Bruno H.D., Ph. D.
I read this book in November 2002 because it was recommend by the specialist that originally diagnosed my ME, Dr Elizabeth Dowsett.
She actually gives the book a recommendation on the back cover. I was diagnosed in 1994 and have fairly religiously stuck to her advice but there was only so much information that could be passed to me in a consultation.
Reading this book really felt like a detailed explanation of everything I was told. It gave me a much greater understanding of my illness and a valuable source for of reference for discussions with illness disbelievers.
You can read my review of the book here. The one line summary is if you have ME buy this book in preference to all the alternative therapies. This book should be your blueprint for life!
Links For ME sites
Action For ME is the UK Charity I currently belong to and seems very into alternative Therapies.
ME Association is another UK Charity I used to belong to and seems more cautious about what it recommends. I am not sure I have any preference as to which is best. I hadn’t been in a support group for a long while but someone suggested I should be so that the charities can form pressure groups to represent suffers.