Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
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Struggling with work at home

Discussion in 'Finances, Work, and Disability' started by wearywriter, Mar 9, 2017.

  1. wearywriter

    wearywriter

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    Hi all,

    I've only written an intro post on this forum so far but do a lot of reading here. For a bit of background - I'm 26 years old, suffering with ME and fibro for about 1.5 years now, although I had milder symptoms for years before. I'm not sure how I'd rate my severity level as I'm in a pretty constant push/crash cycle lately - I don't have a car and often have to walk quite far to do basic errands. It's a long and complicated story but I don't have anyone really to help me with certain things so pacing is really hard. I also have a 3-year-old, which comes with its own inevitable activity.. So I push myself when I have to, but have plenty of days that I spend fully lying down recovering from the previous day's efforts. It's exhausting, as I'm sure you guys understand.

    Getting to the point: I work from home as a freelance writer. I write mostly web content for businesses, blog posts etc. I know I'm fortunate that I have a skill that allows me to make some money without having to get out of bed - I previously worked in office at a magazine and couldn't cope physically. Regardless, I'm really struggling just to keep up with the small amount of work that I do need to do to keep us afloat. I don't make enough to pay rent, currently living with in-laws because rent wasn't happening, but I do have to make enough to buy food and cover some basic living expenses.

    As my symptoms have become gradually worse I'm finding writing more and more difficult. Just sitting down with my laptop and focusing enough to research and put together decent sentences that can be sent to a client is really a struggle. My vision gets blurry, my mind seems to just go blank, and I feel incapable of, well, THINKING. The fatigue also makes it so difficult to get that push of motivation that you need when working from home, so I end up putting things off until I 'feel better', which obviously doesn't really happen, then cramming at the last minute to write before a deadline. Just another push/crash basically, but on a cognitive level as well as physical. It's so frustrating and leads me to get into a mental to-and-fro over whether I'm just lazy and procrastinating or if I'm just plain sick.

    Basically what I'm getting at is, has anyone found anything that helps them to concentrate, clear the brain fog, get some work done? Not working isn't an option, and i'm making my life harder with the way I'm going about things at the moment. I need to write 9 x 400 word articles today, and I look at the brief and just feel the fog descending.

    Now that I've written this I feel like I have so much more I need to rant about :( this illness is truly driving me insane. More for another thread, I suppose.
     
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  2. MargUK

    MargUK

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    Your little one is gorgeous!

    The only thing I've found which occasionally helps me to push through another couple of hours is caffeine. I take my coffee very mild so take 3 Panadol tablets pretty much daily - they have paracetamol and caffeine in them - and the paracetamol helps my joint pain. However I would be really concerned with the cycle you find yourself in and I imagine there are deadlines to cope with too which must be really stressful? Coping with a 3 year old by itself would be hard going with this illness!

    Please don't think you're lazy or procrastinating - this illness is a real bugger for making us question ourselves but it's only because our society puts so much pressure on ourselves to constantly 'do' stuff - it almost becomes how we identify ourselves which is all wrong.

    I realise none of that is much help and I'm really sorry you're having to cope with this but as one who was having similar issues with a part-time University course recently and feeling very much the same as you, I'm concerned you might be setting yourself up for a relapse. Hopefully others will come up with something which works for them to help you out.
     
  3. Valentijn

    Valentijn The Diabolic Logic

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    Laying down as much as you can, and pacing the use of your brain. Give it a chance to relax and recover.
     
  4. IThinkImTurningJapanese

    IThinkImTurningJapanese Senior Member

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    Yes it is.
     
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  5. Snowdrop

    Snowdrop Rebel without a biscuit

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    Hi @wearywriter

    Your situation is difficult and there is no easy answer. Most people here will tell you that with ME what you really need is rest. You are still young and you have not been ill for too long (I know it doesn't feel that way).

    You could do yourself considerable harm if you push too hard. You may put yourself in a situation where you truly can't push. There are things people here have tried to help give them more energy or less brain fog. Sometimes it helps but it can also backfire. Also, from reading here my sense is that some things work for a while and then stop working.

    There are a few things you could try if available to you. Low Dose Naltrexone is one. See: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/

    There are also threads here on LDN but they are very long. See: http://forums.phoenixrising.me/index.php?threads/low-dose-naltrexone.292/

    Some have tried nootropics to help with brain fog. See: https://nuoptimal.com/clear-brain-fog-nootropics/

    I'm not recommending the nootropics nor have I ever tried them and they will cost a fair bit. But I provide it as something to consider. Sadly, that means some research and considering on your part--two things that are at a premium for you.

    You mentioned in your other post you are from SA. You might want to start investigating what if any disability benefits you might have access to--although if you have British citizenship this might be a problem.

    I would consider starting to educate your family on what this illness is. That will be a long term project as there is a big learning curve and people generally need time to 'take it in' and time to adapt to what that means. It's not good to overwhelm people with info but to select out what type of info they might best respond to and give it out a bit at a time. But if you continue to be ill it would be best to try and have them on board.

    I would caution trying to chase too many ideas for spending money on things that might help if your budget is tight.
    It's easy to keep trying things and find a lot of money has been spent with little or no result. There is no magic bullet.
    You are going to have to make some hard decisions and do things that were never part of 'the plan' for your life.
     
    Last edited: Mar 10, 2017
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  6. Snowdrop

    Snowdrop Rebel without a biscuit

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    Not really helpful.
     
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  7. Tyto alba

    Tyto alba

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    Is there any way that you could find alternatives to walking quite far so regularly? e.g. Internet shopping delivery for groceries etc.
     
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  8. Ysabelle-S

    Ysabelle-S Highly Vexatious

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    I don't know if you've tried using your laptop on the bed, which allows you to occasionally put your head back. Not IN bed, but just sitting on a bed, with pillows behind you for support. Mark Van Ness (Prof of Health, Exercise and Sport Sciences) has spoken of a colleague with ME who couldn't work at a desk, but when they moved to another office, there was a cot, and she sat there and could work for hours with occasional breaks to put her head back. He has also talked - you can find the videos online - of staying within your anaerobic threshold in terms of activity and ME. I think resting in between is key, but there might come a point when you simply can't work or need a long break from work. In the meantime, L-Carnitine might help with brain fog. I've noticed a benefit with it. I also take larger doses of CoQ10.
     
  9. Ysabelle-S

    Ysabelle-S Highly Vexatious

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    Yes, if there was a way to cut back on energy expenditure like this, it would help a lot.
     
  10. Dechi

    Dechi Senior Member

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    Nimodipine (nimotop) helps me with brain fog and also diminishes my crashes somewhat and seems to even out my energy a little. I don't do much and I don't work, though.

    If you decide to try it, you have to follow a strict protocol and go very, very slowly. It's the only way it will work. All of those who wanted to go fast quit because of the side effects. I am extremely sensitive to medications and supplements and I have succeeded with it. It took me 2 months to go up to my maintenance dose.

    Nimotop is a calcium channel inhibitor and it increases blood flow to the brain. ME affected people have hypoperfusion to the brain, which is why it works. I have been taking it for 1 year now. If you need more info do a search on this forum or I can provide some as well. Susan Parker wrote a very detailled document about it's usage all over the world. She has been taking it for 12 years and has regained a lot of her previous function. In my case I would say it helps me get about 20% better, sometimes a little more.
     
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  11. Alvin2

    Alvin2 Senior Member

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    Most of us can see ourselves in what you've written so your certainly not alone.
    I was reading Aceytl-L-Carnitine may help the cognitive symptoms, though i can't speak from personal experience since i can't afford to try it (and might take a few weeks to couple months to kick in)
     
  12. IThinkImTurningJapanese

    IThinkImTurningJapanese Senior Member

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    Perhaps not,

    @wearywriter, Having such demands as "failure is not an option" can be very stressful, and with ME/CFS mental activity can lead to a crash just as physical activity can.

    You will probably find something here at PR that will help you with brain fog. I would suggest this, but many of the options suggested, will, if they work, take time. You need help now.

    Paradoxically, acceptance of the possibility of outcomes you do not want can be very effective in getting your way.

    Ohh, thank you for brightening my day. Your child is clearly, madly in love with his mother.:thumbsup:
     
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  13. Still alive and kicking

    Still alive and kicking

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    When I realized what was happening to me I tore through every supplement I could think of and revisited every old trick in the book for energy. The ones that work for me so far, and are inexpensive:

    Brain fog: Biotin - opening a 5 MG capsule and placed under the tongue - chalky but effective. If it doesn't produce a headache for you, then you can swallow it. Warning: it might have a "makes you worse on day 1, much better than ever on day 2" type of effect, experiment with caution.

    General pain and energy: Vitamin C in several forms up to 12 GRAMS per day. Individual tolerance varies and may be as high as 50 grams.

    It should go without saying that a high Vitamin B complex Multivitamin will generally help, but some B vitamins have a much better effect in very high doses. If you check them out here: http://lpi.oregonstate.edu/mic/vitamins you can get an idea of which ones to try. For example, if you google Niacin megadose you should see some mental health benefits. The Oregon State site is mainly to give you ideas for which ones to seek megadoses of.

    I also find that if I have help, I can take an epsom salt bath and it helps reduce my pain for a 24 hour period. Not gone, just waay int he background.

    I wish you well :hug:
     
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  14. wearywriter

    wearywriter

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    Thanks so much to everyone for all of your helpful replies, it's seriously appreciated. No one in my life really believes I'm ill, and I'm very isolated in general, so it's such a relief to just have interaction with people who get it. I think I partly posted this because I needed some affirmation that resting more and doing less was the right choice and that this is a common problem here and not just a result of my laziness. Going to look into all of the supplements better and start seriously making a commitment to decent pacing where I can!
     
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  15. IThinkImTurningJapanese

    IThinkImTurningJapanese Senior Member

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    It is FAR outside of their experience.:bang-head:
     
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  16. tinacarroll27

    tinacarroll27 Senior Member

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    Is there anyway you could give them some educational material about ME because you really need some support? But I know how difficult it can be when people don't believe you. Other people's disbelief made me much worse.
     
  17. Tunguska

    Tunguska Senior Member

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    Entirely get your situation, that's approximately been me too. I would not survive alone without supplements, period, which makes a limited budget a serious bind. Large majority of supplements are personal crapshoots and turn into an investment of trial and error. The few more or less sure to produce some effect (often by virtue of having several mechanisms) - caffeine, NAC, opioids - get problematic with daily/chronic/long-term use. I could start naming a million things (whey, wellbutrin, steroids, racetams, ... ?) but with limited budget it'll seem daunting and there's probably already a thread by Hip somewhere on it.
     
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  18. Tunguska

    Tunguska Senior Member

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    I can give one tip I use, since it gets forgotten, and it works for a lot of people, unlikely not to, to expand on what Marg wrote: when things get bad or when I was on the brink of getting fired, the first thing I reach for is a caffeine + something combo. A ton of combos can work, caffeine + tianeptine (opioid), caffeine + 5-alpha-DHP (steroid), caffeine + aniracetam, etc. Tangentially I have trouble believing in monotherapies at all anymore (though I'm sure modafinil could save your job on a bad day). But this is suggested purely in an as-needed/non-daily/cycled usage; you can do caffeine + tianeptine for months but you'll regret it sooner or later, that's a promise. The caffeine alone has immediate side effects for me and I now think it could hamper recovery over time, but it doesn't stop it being a broadly helpful tool in rough times.

    (basically - when on a budget - the winning strategy is to buy something known to be strong/broad-acting - for a lot of people - and start with a low dose)

    Edit: I should have been more specific, because this post could give the wrong idea: you aim for a complementary substance that can counteract the stressful effects of the caffeine. I'm not advocating combining two pure anxiogenic stimulants here, just the opposite.

    Edit2: I edited this post at least 5 times. It's been a long week.
     
    Last edited: Mar 10, 2017
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  19. Still alive and kicking

    Still alive and kicking

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    RTP, NC
    @wearywriter About the family understanding...

    There is now a documentary on ME/CFS that premiered in January 2017, called "Unrest" (movie, Sundance.. more google terms) but the star of it also did a TED talk. The TED talk is very clear and eloquent. Take a look and see what you think of it. If you think your family would benefit from watching it, you can see if it helps them understand more.

    I usually tell people that I can't honestly say I have this illness because so far, all attempts to make a diagnosis test have failed although hundreds (thousands?) of biomarkers have been found and at least a few foundations are working on it. But most of the biomarkers I know of describe me, and it looks like a neuro-immune disorder related to Fibro and MS but without diagnosis, or treatment yet. What I want is for a diagnostic test to be approved as quickly as possible, along with a basic treatment plan to balance the immune deficiencies and overactivities. In the meantime, I have only supplements, yoga and avoiding too much activity to rely on... except my loving and supportive family :bouquet: .


     
  20. TigerLilea

    TigerLilea Senior Member

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    Maybe if you have someone to support you. I don't. I have to work otherwise I would be penniless.
     
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