Wednesday, 3 November 2010

This and That

There is no central theme to this post. It's more of a hodge-podge collection of everything significant that has happened lately.

Some good news to begin. My fasting glucose levels were normal this time so it seems I am out of the woods, for the time being, with regard to diabetes. That's a relief as it would just have been one more health problem to manage!

I'm currently weighing up how best to manage the whole doctor-patient relationship with my GP. I think I'm still minded to keep control of my treatment plan but I am also acknowledging that I can be a little 'full-on' and hard-headed sometimes and no doctor likes a patient who tries to tell them their job! I've worked through the whole 300+ pages of the NHS NICE guidelines and now have a better idea of what I can and can't ask for. Realistically it is just going to be about symptom management rather than anything that will allow me to return to a normal life but I've already accepted that's how things are now.

One thing I'm wanting to ask him is whether he'd sanction Modafinil/Modalert on prescription. It seems to scare a lot of doctors as it can be equated with amphetamines (speed) but it works in a completely different way and doesn't seem to have the risks of raising heart rates or encouraging dependence. I think it has been used 'off-label' for M.E. patients but not widely. Anybody out there had any experiences of this drug?

Another decision i'm chewing over is whether to get a wheelchair. I have a feeling it would make a huge difference to my quality of life as I could get out and about again but I'm constrained by being too worried about the reactions of others. I know I should get over that and I'll try to - it's just that I don't have the energy or inclination to deal with other people's bullshit. There are still so many cases of people with disabled badges on their vehicles being abused for 'being perfectly fine' or people being told they are only using a wheelchair due to being unhealthy or lazy. I mean, I can walk - it's not that I've lost the ability ... but more than a few steps and my heart rate is racing, my muscles are going into spasm and I feel like I'm going to faint. A wheelchair would mean I could try to start doing normal stuff again and have the occasional day out or whatever. I think I will ask for an Occupational Therapist from the local council to come out and assess ways my everyday life could be made easier.

Oh, and I have a new favourite thing. Magnesium. I never realised how beneficial it could be for so many things. I'm now using a magnesium-oil spray on my skin and I have a big sack of Epsom Salts lined up for baths. I'm already seeing benefits in terms of headaches and muscle pain etc. There's apparently a great book called The Magnesium Miracle that gives a lot of detail of the various benefits of the mineral but I haven't got around to checking that out. All I know is that it seems to be having a positive impact so far.

Finally, I'm immensely relieved to have found a support group that I have such a good feeling about. It has been set up by the production company behind the "What about ME?" documentary and group members post their individual stories, and subsequent updates, in the form of videos. I've really struggled with the isolation this illness has caused and with the fact that, with the best will in the world, most people don't understand what life has become for me. Now I have a place where I feel understood and accepted and that's worth such a lot. I might even start posting video updates here instead of writing, haha.

The group can be found here: Vimeo

That's enough for now, I think. Thanks for listening to my ramblings - take care!



  1. interesting (there's that word again) to read about the magnesium...all the oral magnesium and epsom salt baths in the world never seem to have made a difference to me, but have only heard of the spray and not tried it. might have to look a bit more into that one. had read a bit about people having issues with absorbtion and this being why IV can help.

    the wheelchair decision is a massive psychological barrier to get over. think it's one of those things though that once you do all sorts of new opportunities can open up. if it lets you do things you can't otherwise do then it's pretty priceless. for me, i actually found that when i was using one people suddenly seemed to take the illness a bit more seriously!

  2. Thanks Kirsten. I agree, it's such a hugely symbolic decision about the wheelchair. I wish it was easier for me just to say 'stuff it' and do whatever was going to help me. I give the impression of being hard-headed but I think I care far too much about what others think or say.

  3. I felt a little like that the wheelchair too but I got one anyway and a friend to me to the art galley, it was really scarey for me but on the whole is was just brilliant to be out. Unfortunatley I havent been out in it since because my POTS wont allow me to sit upright so the wheelchair is no good ... but ... once I get a few other things sorted I will be trying some medications to help the POTS and the wheelchair will be there waiting for me. I do understand your reservations but you will probably only feel like that the first time and then it will just be all good. Hire one or borrow one and see how it feels.

  4. I've been taking magnesium for a long time and it is helpful. Also use Epsom Salts in bath too...the pharmacy must think I have a terrible problem with constipation :O) Incidentally I notice from skimming over older posts that blood sugar has been a problem for you and has been for me too for a long time ...especially last year when I had a nasty relapse. I've found chromium to be invaluable for that so you might want to investigate.

    Some of the issues you're discussing re your treatment and GPs etc are quite curent at the moment in terms of people I'm hanging about with (in a virtual sense). I shall suggest one particular friend to you on FB who it may be good for you to know.

    Take care (*)

  5. Hi Barry, just met you on PR site and though id catch up on your blog. I have been using magnesium for a while now and it has been really helpful or me for twitching/spasms/restless leg syndrome and anxiety. My cramps cleared up completely within days! its the only supplement i cant live without.
    have been mulling over the wheelchair issue for a while too. I am not as severely affected as you at the moment, but i still cant walk far or go for days out with my family, which i would love to do.
    Take carex

  6. Hi Justy - thanks for stopping by :)

    Magnesium really is wonderful, isn't it? Have you tried the magnesium in oil/spray form? I find it's ideal for when I'm in bed and start getting that awful tightness in my muscles or start jumping around like I'm on fire, lol. I read that it gets absorbed better than tablets and it does seem pretty powerful based on my symptom reduction.

    It's tragic really that we are constrained by how others react. Intellectually I can see using a wheelchair or mobility scooter as being so beneficial but I still have that stumbling block of worrying about reactions. It's stupid really.

    I hope you can find a way to start enjoying some days out with your family soon.

    take care x

  7. Hi Barry, i agre totally about the reaction o others re the wheelchair. I live in a very rural area with few people and wold just feel very embarrased. But i have thought about it if we tired to go for a trip out like to the local botanic gardens or somewhere like that.

    Another friend of mine with M.E says that mobility aids are not a good idea because they make yu push yourself when you should be resting to recover. If you use a wheelchair then its harder to listen to your bodies messages about resting/overdoing it.
    Just some thoughts.