It’s life, Jim, but not as we know it

I had brunch with my friend D recently.  He’s 75, widowed and severely disabled.  We were talking about porridge and how I sometimes just have a bowl of it for my tea in the evenings as I have my main cooked meal at lunchtime.
“What kind of porridge do you use?” D asks.
“Quaker Oats So Simple” I reply, “it takes 2 minutes in the microwave”.
He pulls a face.  “Eugh, I only like porridge done properly in a pan”.
I roll my eyes.

Does he not think that I’d prefer proper porridge made in a pan?  Pan porridge compared to microwave porridge is the difference between sirloin steak and cheap mince!  However, pan porridge takes 5 minutes during which time I actually have to stand up, then there’s a god-awful sticky pan to deal with afterwards, whereas I microwave my quick porridge in the bowl I eat it in and it’s ready in 120 seconds.  When you are sick and lacking energy choices have to be made.

We then talked about what else we eat in a day.  He tells me he goes out to a greasy spoon cafe most mornings and has a fry up, then eats nothing else for the rest of the day bar some toast or fruit in the evening.  He’s diabetic for heaven’s sake and has been found to be low in both iron and B12 which is probably one of the reasons he’s absolutely exhausted all the time.  So I arrange for a Wiltshire Farm Foods brochure to be delivered, which he doesn’t even bother looking at.  Someone else arranges a visit from the Meals on Wheels service.
“How did that go?” I ask.
” I discovered they’re made in a school kitchen!” he says, horrified.   Eugh!  I’m not having meals made in a school kitchen”.
Well eat nutritionally defunct food and feel like crap all the time then, I felt like saying.

We then get on to the subject of kitchens.   He’s recently moved house and needs a new kitchen installed.  I suggest a quality firm in town, who will send a rep to his house to measure up and I’ve already picked up all the brochures for him to choose the units, worktops, taps and tiles.
“Have you decided on the units?” I ask him.
“Yes, but I need to contact a company in Durham regarding the worktops.  We had these lovely granite ones with a copper streak in when we lived in Cheshire and I’d like those.  They have to make a template up in wood, then they carefully lay the worktop over that – they have to be soooo careful as it’s really delicate and can break while they’re fitting it.  I’m sure the rep will come over to advise and measure up.”
FFS.  His kitchen measures 8ft wide by 12ft long and he’s 75 fucking years old.  Why on earth would he make life hard for himself by getting some firm 90 odd miles away to come and do him a couple of bespoke counter-tops which will take months and cost a small fortune?!  The thing with him is, he still thinks he’s putting a Miele kitchen into a 30ft award winning barn conversion like at his old house.  But he’s not.  That life has gone now and he’s living alone in a small disabled-friendly bungalow.

I find this a lot with both old and sick people, my own parents included.  There is a stubborn refusal to adapt to changing circumstances, or any acceptance that our lives are no longer what they once were.  It’s particularly apparent at this time of year.  We see all the adverts for perfect Christmases on the telly and we want a part of it.  Before I got M.E. I used to make mince pies from scratch, invite all my friends over for dinner the week before Xmas, make a day of choosing a real tree, wrestling it into a bucket of water and decorating it from scratch (then spending an hour hoovering up rogue pine needles), buy everyone and his dog presents which I’d spend hours immaculately wrapping complete with matching ribbons, tags and bows, and send over 100 Christmas cards, not to mention making a couple of trips to the beauty salon to get my nails done and my hair coifed read to paint the town red.  Then I got sick and everything changed.  I can’t remember the last time I went to a beauty salon, I bought a fake pre-decorated pre-lit Xmas tree in the Boxing Day sales one year which I get out of the shed each December and simply plug in, I buy my mince pies from Booths, culled another 5 people off my Xmas card list this year which brings the numbers down now to 36, and not only do I invite no-one over for dinner I won’t have a single visitor to my home for the entire festive period.

For all the years I was bedridden I, of course, didn’t have the energy to have a Xmas tree of any description, and being as though no-one offered to put one up for me I used to hang a couple of baubles from a little palm plant in my bedroom.  I really enjoy Christmas and if that was the only way I could take part then so be it.

We have 2 choices when we get sick.  We either deny ourselves any kind of pleasure because it’s not perfect or what we’re used to, or we can make the most of what we’ve got, even if it’s not perfect or what we’re used to.   Twenty six years down the line do I still yearn for my old Christmas back?  Of course I do, but it won’t stop me from sitting in my pink rocking chair by the fire on Christmas Eve, with my Xmas tree lights twinkling, reading a favourite book and being grateful for what I have.

No-one understands more than me how hard it is to let go of the life we’ve dreamed about, but torturing yourself over things you can’t change is utterly pointless and killing yourself trying to do things the way you always have is a recipe for disaster – instead of enjoying Christmas you’ll just be in a sick, exhausted heap on the kitchen floor at best, or bedridden at worst.  Not celebrating at all isn’t the answer either.  If, when I first became ill, I’d said to myself “Christmas isn’t the way I want it to be so I’ll just not bother” I would have had 26 years of no Christmas at all – how depressing is that?!

I spent 10 years without Christmas.  I was too ill to get dressed, put up a tree, had no way of buying gifts (no internet then!) and even if I had I didn’t have the energy to wrap them and writing my cards took me 2 months, so even though the holidays these days aren’t what they were when I was well I cherish them.  I won’t see anyone.  I won’t have a ‘proper’ Christmas dinner (I’m not well enough to cook one and my parents certainly aren’t).  I hardly get any presents.  I’ll spend Xmas morning, and Xmas evening, alone and in the middle I’ll be with my alcoholic Mother.  Due to my HIT I can no longer eat mince pies, drink mulled wine or stuff my face with chocolates.  But I’ll still cherish the holidays.  I am alive, I have family, I have my lovely home and my lovely dog.  I have the energy to get dressed and walk with Bertie in the freezing winter cold, to watch telly or read a book.  I have a sparkly Christmas tree 🙂 And for that I am thankful.






4 thoughts on “It’s life, Jim, but not as we know it

  1. Lisa Sullivan

    Beautifully written as usual Jaks! You are so right about learning to do Christmas the best way you can when you become ill, it certainly becomes an exercise in living the moments of joy as best as you can without making yourself sicker. I agree many folk still have their old expectations about food, Christmas time, house decorations etc and I don’t really understand it. Maybe us younger sick folk have become unwell so suddenly that we have had to redesign our lives in a way that older folk find harder to cope with. I am alone myself this Christmas, my son has finally flown the coop and so to make life easier and a little fun this year, I asked my caregiver who is also alone this year to come and have Christmas dinner at a flash hotel restaurant with me. I’ve never been to a hotel for Christmas, but I decided why the hell not. No cooking, no misery just nap all day and turn up for a few hours and go home. I may even have a few bubbles who knows! Merry Christmas Jak and Bertie, May your day be as perfect as you want it.
    Thank you for your fabulous blog and writing this year. You bring me a lot of joy and a lot of moments of nodding my head in agreement and feeling your pain and celebrating your wins.
    Hope your body behaves enough for you to enjoy some rest and nice memories made.
    Love from New Zealand xxx

    Liked by 2 people

    1. Jak Post author

      Thanks so much for your lovely comment Lisa 🙂 Good on you for going out for lunch with your caregiver, what a great idea! My parents and I gave up on Xmas dinner several years ago – we just have soup, sandwiches and a sweet then go to a hotel on Boxing Day for a slap-up meal someone else cooks – it’s totaly stress-free and works for us! I hope you have a lovely time xoxo


  2. Sarah

    I’m so glad you’ve brought this up. I am really stressing about Christmas. I don’t want to do it but I have a son and my mum to consider. The house is in an awful mess as I decided to do a spring clean, pull cupboards apart and then fractured 3 bones in my foot because I now have osteopenia
    When I stand up I also feel like I’m going to pass out. Do you get that too?
    I’ve also got a real issue with food, zonking out after I eat a meal so a big lunch is completely out of the question
    I feel so miserable. Especially when I see those adverts and all the things that are on to go and visit. I used to go to the panto every year with my son. Being bedridden really strips a lot of you away. Did/do you constantly give yourself a hard time for not achieving things.
    My son’s back from Uni tomorrow. I’m excited but also apprehensive as I’ve had problems with my heart playing up too (racing between 120-150 and missing beats) and I have struggled with me and the pets. To have another person in the house seems daunting

    With regards to your friend I see accepting how disabled you are like being an alcoholic. They have to realise it themselves otherwise it’s in one ear and out the other. He probably wants that worktop because he needs a link to the old house, the old life. He hasn’t grieved for his loss which unfortunately is something we disabled need to do to move forward
    I hope you have a good Christmas, I really do. My favourite one was before my Son was born, I was on my own after my ex husband left me and I drank wine and made a shelving unit from scratch whilst watching TV with my dog and cat. My little family. I used to make mirror frames and design them so needed a bespoke shelving unit
    Maybe look to make something that day if you can, so you can look back and smile. Maybe something for the tree and make that your ritual
    Sarah x


    1. Jak Post author

      So sorry to hear you’re struggling Sarah, it can be a particularly difficult time of year.

      It sound to me like you have POTS (racing heart, feeling faint when standing up, zonking after a large meal) – is that something you could get checked out?

      It’s important your son, and Mum, have a nice Christmas but they’re not kids – they’re adults. It’s also important YOU have a nice Christmas and if you’re not up to catering for other people tell them to cater for themselves! Neither my parents or I are up to doing Christmas, so we don’t do Xmas lunch (we have soup and sandwiches) then go out to a hotel on Boxing Day for a proper dinner we don’t have to cook. It’s not conventional but we’ve done it for several years now and it works for us. That’s the key – doing what works for YOU and your circumstances, regardless what anyone else is doing.

      Jak x

      Liked by 1 person


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