A day in a life with chronic illness and disability…

There’s a recent trend for chronically sick and disabled people to describe their lives online, in an effort to make the public, the DWP, and Atos, understand what life is like with a chronic, incurable condition – or conditions, quite often. In no particular order, the biggies are ME/CFS, COPD, O-A, FMS, heart failure and aortic valve calcification/stenosis, tachycardia, hypertension, plus a raft of less serious crap.

So, this is a look at what my average day entails, always assuming I’m not well enough to be able to get out to the pub (increasingly rare), or able to break the monotony by being well enough to cook for the freezer, because cooking every day just can’t happen, and ready meals really suck – I eat just once a day, so it has to be something I enjoy, not simply endure. I did manage to get to the pub last Monday, but I’ve been in dreadful pain ever since – running up against the law of diminishing returns, then – whatever I get from going out increasingly has too high a price.

Remember, boys and girls, that this is a million miles away from what I want it to be – like very many others, I simply don’t have a choice:-

06.00 Take first meds of the day. Go back to sleep, hopefully.

Later – how much later varies, usually before 10.00 – get up, by which I mean move from couch to computer three feet away. Take inhalers.

Drink water as needed throughout day. And in between meds I’m usually online, writing, reading, or spending too much money.

10.00 Take diuretics – pee as needed.

12.00 More meds.

13.00 And inhalers.

15.00 Or thereabouts, refill filter jug in fridge.

17.00 More meds.

18.00 And more inhalers.

19.00 Eat. Leave computer for couch, switch to iPad. Read and/or watch TV.

21.00 Yet more meds (antibiotics for which the need varies). Refill filter jug for morning.

23.30/00.00 Last meds of the day, including inhalers. Put together first batch of tabs and caps for tomorrow. Sometime between then and 03.00 I’ll get to sleep. Currently not sleeping much at all.

Repeat ad nauseam.

So, really, is it any wonder that, like so many others, I’m depressed and, at the moment, suicidal, and have absolutely no desire to talk to anybody because I simply don’t have the energy to spare?

Yes, I know I write blog posts and spend time on Twitter – that’s a different, and as yet unaffected, part of my brain which still functions reliably. The part labelled “Conversation” is, right now, an echoing void.

And there’s an immense attraction in the idea of taking a whole tub of DHC, and just bringing the darkness down…

I’m not going to, though, no matter how tempting it is, because I still cleave to the belief, against all the evidence so far, that tomorrow, next week or next month, might just be better.

And also because it would be, in a way, selfish, in that it would upset too many people, some of whom seem to feel, rightly or wrongly, that the world is a slightly better place with me in it.

I hope they’re right…

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17 thoughts on “A day in a life with chronic illness and disability…

  1. I understand to a certain extent how you are feeling and even why, obviously we are all different and face different problems during our day to day ‘lives’ if that’s what they can be called.
    I am not going to offer platitudes Ron, you are far too intelligent to fall for those so I will just state clearly I would miss you if you were not on twitter, I would miss reading your blogs if you no longer wrote them and yes I do believe I would miss you as a person.

  2. Hi Ron. Your right. The world is better with you still here. I look forward towards your blogs Every day. Sometimes they are funny and I get a chuckle. Take care Ron.

  3. Thanks Penny, and Annie – I actually feel a lot better having got that out of my system. Blogging, apart from its other uses, can be cathartic.

  4. I’m glad to see that you’re still here Ron. I missed your blog posts while I was on holiday. I need my regular ‘fix’ of your written word.

  5. Hi Ron, well i am glad i found you and your blogs, you have added another dimension to my rather dull home life. yes i can still get out under my own steam though thats getting less and less now. yes i get outings thanks to my nephew ,himself a dialysis patient of 30 years with 2 heart attacks and 7 bouts of pneumonia under his belt at 46 years old. but his zest for life beats none other ive ever met. so my life isnt as humdrum as it could be. but i do spend long days and sometimes weeks, specially in winter and bad weather in summer, stuck indoors with nowhere to go and at the times my nephew is in hosp can be 3-4 weeks going nowhere much and doing nothing much/. so yes.. a new dimention has been added to all that. thank you.

  6. How I empathise with your daily routine and that little voice which whispers welcome to the darkness! It’s a battle I also fight.

    I too am in the midst of a deep depression that begs me to isolate myself, and as a counsellor in some seemingly distant part of my former life, I acknowledge the traditional talking therapies actually can’t help with this particular bout.

    The reason is, this particular depth of depression is a result of the situation I find myself in, the Welfare Reform Act had left me financially and to some extent physically & emotionally wrecked.

    In less than a year, I’ve gone from being able to manage to survive on my Benefits; to losing so much income via ‘the Cuts’, it is no longer viable to live without help from family, and the family Pot is shrinking fast.

    That means my once managed Depression is also becoming fast unmanageable! And for the first time in 50 years I can see No Way Forward!

    I’m hanging in here because of the very family I’m bleeding dry, who tell me daily I’m worth it; so I too hope they’re right

    All best xx

    • The best advice I can offer, Jayne, is to find a local Welfare Rights Advisor to help with your appeal, or re-application, depending on where you are in the process. Other than taking the expensive route – a solicitor, probably out of the question – it does appear the best way of making a successful claim. It’s an established fact that very many more people who have someone to represent them succeed than those who represent themselves.

      Start with the CAB and, if they can’t help, they should be able to put you in touch with somebody who can. You could try a Google search in your area too.

      It might be worth talking to http://www.facebook.com/SocialWelfareAdvocacy (you’ll need a FB account if you don’t already have one), or http://thefullfacts.com/esa/forum/ or both.

      http://www.benefitsandwork.co.uk/ are very good too, though they do have a membership fee (as does thefullfacts I think). If you can afford it (it’s round £20 a year) I think Benefits and Work is probably your best bet.

      Best of luck.

      Ron.

  7. May I say also…your email blog came late this morning…and I was thinking, hope Ron is ok…bit late….mmm wonder what’s occurring…
    Didn’t realize that Monday a.m….Ron ( and coffee) do make the world a Better Place…..
    And there you are…can put the kettle on and get cross, laugh and Learn stuff
    Thanx Ron…..:-)

  8. And I hope you DO improve soon, Ron. In response to your mention of the proliferation of online chronically ill blogs, I say THANK THE GODS. It is only through learning about the lives of others that I was able to (a) rebuild my sense of identity which had been toppled due to my illness and (b) understand my own body and trust myself more…which is necessary when doctors know so little (even the ones you pay in gold & extra limbs). I feel like my most understanding friends, now, are those I’ve never actually laid eyes on. These are the people that have been forced into non-judgementalism (if that’s a word). Hmm, I may be starting to ramble, so I’ll stop. Best wishes for you.

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