Chronically Ill and Left Behind?

A friend has just gone back to work after 9 months of maternity leave only to be told on her first day back that they would like to make her redundant.  She’s been preparing herself to go back to work for months only she doesn’t seem to have a job to go back to.  Whilst a colleague in a different team has her boss making cakes for everyone to welcome her back from maternity leave my friend finds herself dropped in at the deep end.

emptyoffice-drumrick-flickr

image by drumrick on flickr

Whilst she’s been away the technologies she works with have moved on.  She feels disconnected and like everyone has moved on without her.  I know how I felt going back to work there after 3 months of sick leave and I got to do a gradual return to work with reduced responsibilities.  But it did make me realise how strange it would be to return to an office work environment.  The circumstances would be different and I’d be starting afresh but it would still be a major adjustment.  Well, not a problem because I don’t want to return to the kind of working situation I used to be in before illness robbed me of working.

Anyway – I’m digressing.  My friend has to complete a skills audit profile for HR to see if they can reassign her to another role.  Also she needs to get that CV up to date.  She asked, and I offered, to help her out with these.

What was an advantage was I haven’t done a job since I worked with her so could remember quite well a lot of the roles, skills and experience her job involved a couple of years ago.

But what did leave me shocked was realising that the world has (quite possibly) moved on a lot since I was last employed.  Are there new rules about CV’s now?  Do you need to highlight different things, include your blog or create a virtual CV?  Have the rules of the game changed?

I’m not really asking for the answers here. I used to be a bit of an expert on looking for and applying for jobs.  I realised just how much time has passed with me on the sidelines, not keeping abreast of the world, not knowing anymore.

I realises that the world is changing while I sit here on the sofa for years on end busy being sick.

Everytime I go out somewhere I see a new building, a new housing estate, a new shop, a new road that I’ve not seen before but that don’t look particularly new.  Because it’s only new to me.   It changed while I sat on the sofa.  if someone doesn’t tell me about online in the channels I visit – then I don’t know about it.

clock1-designwalla-flickr

image by designwallah on flickr

I wonder if other things are changing, developing and moving away from me aside from those physical environmental things.  Fashions, attitudes, social interactions, language, legislation, education.  Are the people who I’m closest to actually getting further away from me without me seeing it happening?  As their lives evolve and change with me just barely in it.

There’s not much I can do but to do as much as I can.  And I’m already doing that (and sometimes more).  So I can’t change the changes.  But perhaps I need to do more mentally prepared at just how much of an alien I am becoming in the worlds and lives I once knew so well.

I can see how relationships may not suddenly break from chronic illness, but gradually slowly over months and years the cracks can appear from all that wear.  How do I guard against that damage which is almost inperceivable to see happening, especially when I am typically too sick to do anything more than the meager amounts I can?

I guess life has no certainties for any of us.  You just have to do your best and make the most of what you’re given.  But it’s still frightening to lose so much – even if it some of it slips away slowly while you’re not looking.

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12 Responses to “Chronically Ill and Left Behind?”


  1. 1 ninacolors April 28, 2009 at 3:37 pm

    You haven’t just been sitting on the couch; you’ve been becoming an artist who takes commissions. Are you sure you would want to go back to trying to keep up with all that stuff? I think CFS gives us a certain kind of freedom from collecting data and “keeping up”, which exhausts everyone.

  2. 2 Renee April 28, 2009 at 4:09 pm

    I too feel like I am out of sync with the world..and watch it from just out of my reach, not having a clue of what is new in fashion, style, the town I live in, or even the lives of those I care about. It all goes by and changes so quickly..Do I want my old life back? NO! I would like to be healthier and more active …but I am trying to make my world a safe, peaceful place to live and enjoy!
    Acceptance with a fighting spirit…
    Renee

  3. 3 ashysheela April 29, 2009 at 9:21 am

    I know what you mean about new shops/buildings/roads – every time i go into town i get this feeling that i have been living in a different time dimension, as so much changes while i sit in my house bubble. Also i only see maybe the same two streets and when i go somewhere different, or drive by in a taxi it shocks me how unfamiliar these nearby streets have become. It does make you feel like an alien: a foreigner/tourist in your own town.

    That said, even as a well person you would have to constantly sieve through all that information and just keep what is relevant, and after the time has passed it all soon becomes irrelevant again – i think you would soon catch up with the important stuff if you “re-entered” that world, though it would be a bit of a culture shock i am sure.

    As for keeping up with the world of people you know and being able to share with what is real for them, they also need to reciprocate and keep up with your world, which may be harder to do but is more improtant as you are the outsider. I am not sure you can guard against it. I think cracks do appear and the gulf can widen and it takes effort to keep cementing! I have had to choose who to use my cement on, and who to let go of. That has included family. If little cementing is being done from their side that is the sign for me! It still definately feels like loss, but new people can come in in different ways (online etc).

  4. 4 Toni May 3, 2009 at 3:23 pm

    I live in a relatively small town in California. I have lost touch with how it’s changing. Whenever I go to a doctor’s appointment, I’m always amazed to see new buildings and new shops. But because of my laptop (my constant companion on my bed), I don’t feel out of touch with the world. In fact, I think I’m better informed politically and socially than before I got sick because I look at so many news and cultural websites.

    The biggest adjustment for me has been the loss of so many friends. I’ve learned that some will stick around and some won’t and that there’s nothing I can do about it. I used to blame them but that only made me feel more sick. Now I see that there are lots of reasons why friends may drop away — some are uncomfortable being around the sick, others are too busy to fit in the kind of very short visit I can handle, others find we just don’t have much in common anymore. I try to just treasure the few who have stuck with me. It’s been a long hard road to acceptance though.

  5. 5 Chris Hill May 9, 2009 at 3:37 am

    Are you sure that you’re taking 5mg doses of D-Ribose? It seems like you could take a much higher dosage. People looking for an enhancement in exercise performance take it in 3 gram doses, 3-4 times a day (for the first week) Thats about 3,000 times what you’re taking.

    Perhaps D-Ribose isn’t the limiting factor in the citric acid/kreb cycle ( http://en.wikipedia.org/wiki/Citric_acid_cycle )

    Have you tried anything else? Perhaps malic acid, pyruvate, pantethine (CoEnzyme A precursor) Citric Acid, Alpha Ketoglutarate. You can even buy NADH and try it out.

    I haven’t done much research into CFS, so maybe I’m barking up the wrong tree.

    For example, my sister has a gluten intolerance, which had similar symptoms.

    If any of this sounds interesting, shoot me an email – although I am not a professional, and am only interested in nutrition as a hobby.

    • 6 rachelcreative May 9, 2009 at 11:04 am

      Yes you’re absolutely right it’s 5g doses and not 5mg. I got myself muddled.

      Thanks for the link and the information but it’s a bit beyond my understanding. I’m someone who got grams and mg mixed up after all!

      Are you saying to try those things instead of, or alongside?

  6. 7 Chris Hill May 23, 2009 at 12:50 am

    Sorry I’ve been slow to reply, I’ve just got through finals.

    Yes. You should try a B multi-vitamin ( With B1, B2, B3, etc.) perhaps B-50 or B-100 (which means each tablet has 50 or 100 mg of all the B vitamins)

    Magnesium Malate is recommended for people with CFS and Fibromyalgia.

    Those two (a B Multi, and Magnesium Malate) are worth trying out.

    • 8 rachelcreative May 23, 2009 at 9:48 am

      Hi Chris. I do already take B vitamins as part of my immune focused multivitamin Immunace from Vitabiotics http://www.vitabiotics.com/Immunace/

      Vitamin B1 (Thiamin) 18 mg
      Vitamin B2 (Riboflavin) 6 mg
      Vitamin B3 (Niacin) 27 mg
      Vitamin B6 10 mg
      Vitamin B12 14 mcg

      Vitamin A 800 mcg
      Vitamin D 10 mcg
      Vitamin E 40 mg
      Vitamin C 150 mg
      Folic Acid 500 mcg
      Pantothenic Acid 20 mg
      Vitamin K 70 mcg
      Betacarotene 3 mg
      Iron 8 mg
      Magnesium 50 mg
      Zinc 15 mg
      Iodine 200 mcg
      Copper 0.5 mg
      Manganese 4 mg
      Selenium (Yeast Free) 180 mcg
      Chromium 100 mcg
      Cystine 40 mg
      L-Carnitine 30 mg
      Bioflavonoids 30 mg

      I’ve found Immunace to be highly effective. A study has also shown it to be effective in assisting the treatment of people with HIV.

      I also suppliment with a sub-lingual high dose B12 1000µg.

      I sometimes suppliment with extra zinc, vitamin C and recently switched my Magnesium with Calcium as dolomite to Magnesium Citrate.

      Magnesium Malate doesn’t seem to be widely available here in the UK and what is available is (as you probably know) quite expensive. If anyone knows of a cost effective supplier int he UK for Magnesium Malate I would be interested.

      I’m hoping to re-introduce Q10 and possibly L-Carnitine (to top up my multivit) at some point but need to make considered changes to suppliments to assess effectiveness and side effects. I also have to be careful to consider supplimental doses with that I already receive from my multivit.

      I still have no idea what “Perhaps D-Ribose isn’t the limiting factor in the citric acid/kreb cycle” means.

  7. 11 Chris Hill May 26, 2009 at 5:43 am

    The Kreb/Citric Acid Cycle: Its a complex chain of events ( http://en.wikipedia.org/wiki/File:Citric_acid_cycle_with_aconitate_2.svg ) where one compound is converted to another, and then to another, and so on until it eventually ends up back where it started. In the process, fats and carbohydrates are converted to energy. Its complex, and I’m barely able to understand all it myself.

    CFS seems to be the result of a problem with the Kreb cycle, or the mitochondria where it is housed. This is almost a certainty. But the exact cause is still unknown. http://www.fightingfatigue.org/?p=2524

    So if the cycle gets “held up” by a malfunctioning reaction, (like a traffic jam) then it may be possible to supply your body with the compounds that are not being created (because they got held up by the traffic jam).

    My best guess for trying to fight CFS would be by supplying your body with kreb cycle compounds. For instance, magnesium citrate is magnesium bound to citric acid. Thats one kreb cycle compund right there, plus magnesium is required for certain mitochondrial functions. Malic Acid is a kreb compound thats on the other side of the cycle, and has been showed to help somewhat in CFS. The reason that its in the “Magnesium Malate” form, is because the straight up malic acid may be hard on your stomach, and would be released into your body very fast, and then leave fairly quickly.

    Heres a list of stuff I would try if I were you:
    -Magnesium Malate & Magnesium Citrate (or you could eat a bunch of lemons and green apples)
    -Calcium Pyruvate
    -Alpha Lipoic Acid (I think this might help a lot. Don’t buy the expensive R-ALA, its not worth the price)
    -Vitamin E (400 IU, mixed tocopherols)
    -Grape Seed Extract/Pine Bark Extract (very powerful antioxidant, works well with Vit. E)
    -Glutamine Alpha Ketoglutarate (Glutamine AKG, it is mainly used by weight lifters and athletes. It contains Alpha Ketoglutarate a kreb cycle compund, and glutamine, which can’t hurt. Do not buy Arginine or Ornithine AKG, they will give you insomnia)

    I would also add a phosphate to the mix, because it is needed for D-Ribose to convert to ATP. Inositol Hexaphosphate is pretty inexpensive.

    I would stay away from CoQ10. I have found that it does increase my energy, but that it takes several hours to kick in, and keeps me from sleeping well. I would also hesitate with NADH. I have not tried it myself, but the guy that has this website: http://www.raysahelian.com/nadh.html seems to think that a tolerance develops, and that it only temporarily relieves CFS. Everything I’ve seen from this guy’s site matches up with what I’ve experienced myself, so I trust it.

    There’s one other thing that may be of use. Coenzyme A (CoA) , is created from Vitamin B5 (Pantothenic Acid) through 5 steps. You can buy something called Pantethine ( http://en.wikipedia.org/wiki/index.html?curid=5703415 ) which is 1 step away from CoA. I would have bought some of this and given it a whirl myself, except that its a bit expensive, and supposedly degrades if it isn’t kept refrigerated. So you might just pass on it.

    I hope this isn’t too much to swallow. If I knew you in person I would just give you what I have available, but you live in the UK, and I live in California. I hope you find something that helps you feel better.


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