Thursday, October 24, 2013

RELAPSE 3: SURVIVING

In his book The Selfish Gene, Richard Dawkins described living organisms as "survival machines". We are, his point was, basically machines whose function it is to procreate and get our genes into the next generation, thus insuring their survival. We are hosts for our genes, and they make us act in a way that makes sure they go on living.

That's pretty much how I feel, like a 'survival machine'. My goal, at the moment, is to survive, and little else. After a long time striving to get better, my objective now is to insure that I don't get any worse. My life is about getting through the days, and getting out the other side unscathed.

It is now eight weeks since I crashed, and it's been a bit of a rollercoaster. The first few weeks were hell, I stabilised a bit, and then started using my rebreathing mask, and began a recovery of sorts. I improved quite quickly over the space of a week, but now I have stalled, and am not, for the moment, getting any better.

The rebreathing mask, as I wrote about in the last post, was prescribed to me by the Breakspear clinic. I have low levels of carbon dioxide in the blood, and the mask is supposed to raise those levels. This happens because when I breathe out while wearing the mask, the mask traps the CO2, and then I 'rebreathe' this CO2 in again, thus bringing my carbon dioxide up to normal levels.

I was using it for a week before my crash. I stopped using it when I got a stomach bug, intending to start again when better, then crashed, and didn't go back to it for a month. When I did, I immediately felt better.

Yet this improvement has now stopped. I have stalled at about ten or fifteen percent less energy than pre-crash days. I was already pretty limited, now my limitations have been exacerbated.

Everything is just that little bit more of an effort, that little bit more difficult. I'm dragging myself around with extra struggle, as if someone had added a couple of kilos to this phantom backpack that I feel like I am carrying around. Standing and cooking dinner takes more out of me, I have now to sit down in the shower, I haven't been out of my home town since it happened, I have seen two of my friends, on two separate occasions, for half an hour each, in seven weeks, and hardly any of my family. Every day is just that ten or twenty percent more of a battle than it was just two months ago.

I have gone back to work, but at a reduced level. I taught two hours last week, and will do four this week. I anticipate maybe getting up to seven or eight a week, compared to twelve to fourteen hours a week pre-crash. I am still lucky enough to be able to work - I know many PWME do not have that ability - but everything will have to be reduced, for now.

Because of this, financial survival is now another necessary objective. I was never comfortable financially, but did manage to save a little to pay for treatment, but now it will be about being able to make rent and pay the bills every month, and little else. I am going to have to cut back on simple things, like going to the cinema, or buying that extra piece of expensive sheep's cheese.

So basically I work, buy food, rest, sleep, cook, eat.  This will be it for the time being. I spend a lot of time on my own, out of necessity, and do feel quite isolated, though in truth I have no desire at the moment to see anyone. A bit of solitude right now is probably all I can cope with, being with people involves either having to pretend that I am better than I really am, or else explaining why I am not well, and how I am feeling, and neither prospect is appealing.

I am continuing with the rebreathing mask, am sleeping in it for a few hours a night, which is awkward but doable, and am using it for a total of about four hours. Breakspear advised me to try it for at least eight weeks, so I'll keep going and see what happens. I have also started using my FIR sauna again, and am up to 40 degrees, and will continue to increase the temperature. No progress from anything yet, though hope springs eternal.

I continue taking the anti-depressants, which help keep me on an even keel and smooth out the bad times. Without them I would surely be a mess, so I am grateful for the balance that they provide. I find that they allow me to take things as they come a little more, to just accept what has happened and to try to deal with it, without melting down into self-recrimination, despair and regret.


It is a period of adjustment, and will take me a few months to work out exactly what I can and cannot do. Right now I am being cautious, and trying to take care. Right now I am thinking of little else but survival. 

12 comments:

  1. Trying treatments can be a positive thing to do, but it's very difficult to know what treatments to actually try. I know I tried all sorts of things early on but at this stage I am really just waiting to hear if any do actually work. I am not being negative, please don't take it as such, but there are just so many treatments out there.

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    1. I agree, you have to be judicious in choosing which treatments to try. This is one of the reasons I started this blog, I found that there was a lack of first hand information out there about certain treatments that I was researching. You can´t try everything, and we also have to take into account that many treatments cost money, and so must be entered into with caution.
      Information and knowledge are power in this area, and in choosing which treatments to try we have to be well informed.

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  2. Really really hope you get out of this relapse soon. What you say about the goal being to survive and nothing else is totally relatable. Like you I spend a lot of time alone but I think it is a good thing as it enables us to rest without distractions. Stay cautious, but stay positive. Sending you all the spare energy I have.
    Hayley-Eszti

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    1. Thanks for your comment, Hayley, and for the spare energy (and I am sure you have little enough to spare!) To be honest, I at least retain some basic functionality, and though I'm limited, things could be worse. I know a lot of PWME aren't even able for the limited activity that I can do.
      About survival, it's a little like shops and businesses during this economic downturn we're having. Just surviving is now the new success. Surviving, keeping our head above water, and waiting for better days.

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  3. Hi, this is actually Crumpet writing from my new account. I shut my blog down as gone through a terrible personal crisis (you have no idea how bizzare lol). I hope you are feeling better? I had to cancel my recent Breakspear appt as was too ill, but still using my mask as much as poss

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    1. Hi Crumpet, sorry to hear about your recent downturn in health, that sucks. It's a pity you had to shut down your blog, wouldn't you think about keeping it going once you are feeling better? I think sharing info and keeping in touch with other people in the same situation is really valuable and important, and a blog is a good way to do this. Anyway, maybe think about it if you manage to pick up.
      I'm still using the mask, I'll blog about it soon. I don't think it is really substantially helping me yet, though I will keep going with it for the eight weeks. Have to return to B'spear in January.
      Anyway, keep in touch, let me know how you're doing with The Mask. If you don't have your blog, at least you can contact me by email. Good luck with it all.

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  4. Well my blog was not very successful anyway he he! I had no followers :-( I think my English degree was wasted. But it probably wasn't helped by the fact I am usually too I'll to write it and my eyesight is clearly hindered by my big 'Bane mask',as I call it. Not sure if you like Batman! Anyway, I like reading your blog and others, as they make me feel more normal when my day involves wearing Mr Men PJs, a big mask and injecting myself with histamine. I laughed at your last post, but thank yourself lucky you aren't a female doing the Perrin massage?! Luckily I sleep downstairs :-P Do you think you will try the LDI? I think it helps a but, but I've had so much stress lately. I am going back in January too, but dreading the journey. It must be bad for you. They found out I don't gave Lyme so at least I don't have to have antibiotics :-)

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    1. Not sure about the LDI, it sounds like a lot of trouble and expense for something that may not help very much. Though I rule nothing out.
      As for your blog, I had a look at it when it still existed, and found it interesting, though it was in its early stages. I have very few followers too, though I get people to read my posts by advertising them on various Facebook pages and on forums. Funnily enough, I have an English degree too. I have often thought that it was wasted!
      The journey to Breakspear isn't too bad for me actually, there is a direct flight from an airport here in the west of Ireland to London Luton, so I can do the journey door to door in about five hours or less. I just sleep on the plane. The worst part is having to stand in line for the security screening, but it's doable.
      Hope you manage to improve a little, travelling with ME is very difficult and stressful, and stress is a killer for us.

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  5. I know what you mean. I guess I will try anything at this point because I am only about 30% on the ability scale and in bed most of the time. Also I keep getting gastritis ( inflammation of the stomach lining) and Dr Monro says it could be food allergies. To be honest I think it is most likely stress, as I get very anxious and always have. I agree it is a killer! I really find my treatment from the OHC helps though.
    Interesting! Nah, your blog is really good! Thanks, I think it needed more technological input lol. Did you study language or lit? Are you an English teacher then? I was also a teacher, but not English. I taught primary and then became an SEN teacher which was really stressful and probably contributed to my getting ill.
    That sounds okay. It is a shame there is nothing for you in Ireland. My sister drives me and I cannot sleep in the car! I get really adrenalised whenever I do something big and can't relax. Maybe that is more in the lower abilities? I have had it 5 years.

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    1. I studied Eng Lit. I teach English and Spanish mainly now. Any kind of teaching can be stressful, and is really hard if you are not at your best. This is especially true if you are a conscientious person, like me and many people who develop ME, you don't want to let your students down by missing classes, and so end up pushing yourself too hard.

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  6. Yes I am similar. I put too much effort into it trying to do well. I tried private lessons when I was at moderate level but found making the resources too tiring. I think I will have a change of career when I recover. I am still fairly young I guess!

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  7. Rebreathing mask? Doesn't a paper bag do the same?

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