A Change of Plan

5 Oct

I hate having to change plans. I hate it, I hate it, I hate it.

Don’t get me wrong, I’m as flexible and spontaneous as the next (chronically ill) person. But when I have to change plans because of my illness I hate it. It doesn’t feel like a fair choice. It feels like my hand is being forced.

And that’s where I am this weekend. I have had to change our plans for the weekend because my stupid stupid body is not playing ball.

It is Mr B’s birthday on Friday and his Mum and Grandad are making the trip from Shropshire to London tomorrow for a family Sunday lunch to celebrate his birthday. The plan already revolved around me and my stupid body even though it is not my occasion. Mr B’s brother and sister both live in London too, and we were all to meet at our place and then go for Sunday lunch at our local pub. We were doing it local to us so that I didn’t have to provoke my beastly body by travelling too far. Even when it was Mr B’s sister’s birthday earlier in the year we met at our place and went to our local pub to accommodate my limited energy needs. I hate that it always has to be about me because of my ME/CFS.

And now I have been forced to change the plan; to bow out from the Sunday lunch at the pub thanks to my body’s decision to inflict flaring fatigue, heavy pain, burning achiness, dizziness and headaches of higher proportions than is my bearable ‘usual’ level. So yes, I will not be going to lunch with Mr B and his family. Instead I will be staying at home resting on the sofa.

Mr B’s Mum is so understanding and suggested we just have take away at our place to save me the effort of going out. But Mr B and I fear even that will be too much for me right now. After an hour of chatting and socialising I wilt at the best of times never mind when I am mid flare. So we have compromised with my body and everyone is going to come here for coffee before heading out for lunch. This is hopefully enough to pacify my body and quell any retaliation from ME/CFS. I will not play hostess (have well and truly given up on that by this point, my friends are well used to making their own cups of tea when they visit). I will merely sit and chat for a little bit so I get to see Mr B’s family and then I will rest.

I’m telling myself that this is better for everyone all round. Eating out with my long list of food intolerances is a little (haha, understatement of the year, massively, gigantically) tricky and requires energy enough to decipher the menu and discuss my requirements persistently with the wait staff. Nothing like spoiling a meal out with a barrage of 20 questions about traces of ingredients, checking this, checking that, all for just one roast lunch.

But I hate having to change plans. I feel bad and guilty for having messed up the plan. I feel sad that I’m missing out. But more I am annoyed. Annoyed with myself. I feel like I’ve failed at managing this illness. After 3 years I thought I’d got the hang of it. But no, still there are curve balls that throw me out of whack.

I totally underestimated the impact of the mini break away in Sussex last week. Even though I didn’t push myself and do too much whilst there, or so I thought,; even though I stuck to my diet; even though I used my wheelchair when out and about; even though…..the list goes on. And now there is no point dwelling on it. That is a waste of energy. And as you know energy is in limited supply around here. Learn the lesson, rest lots and move on. The flu jab shenanigans at the start of this week have just compounded things. Two outings in two days was never going to end well. And on the back of last week’s trip away, I am now forced to admit, ‘what was I thinking’?!

I naively thought, despite my consultant’s firm warnings, the flu vaccination itself wouldn’t affect my poor body. I thought if I did have any side effects from it, they would be full blown flu or nothing at all. But of course that’s silly. There are fifty shades of grey after all. And thank God, touch wood three times, throw salt over my shoulder etc, I do not have full blown flu as a result of the jab. But I do have something. The achiness and sore throat is not ‘just’ ME/CFS. But lets hope that my shade of grey does not getting any darker. And by taking it easy and not going for lunch I quell the tide.

But no point stressing or dwelling about it. I am where I am. Learn the lesson; file it way ready for next time and move on. There were reasons for getting the flu jab this week, which I won’t bore you with right now. Suffice it to say it had to be done this week.

Sometimes that’s just the way it is. I haven’t mismanaged anything. I have just tried to make the best and do the best in a precarious situation.

No point stressing about it. Learn the lesson so you avoid future repetition and rest so that in the not too distant future you are well enough to move on; to pick up the pieces and start again.

I think I need this mantra on audio loop or plastered all over the white walls of our apartment, maybe then I’ll stop and believe it.

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27 Responses to “A Change of Plan”

  1. dawnhosking October 5, 2013 at 9:32 am #

    I so recognise what you are saying here. It could be me that you are writing about. I am mid flare/relapse at present and it is not game of fun that’s for sure. Take care of yourself.

    • myjourneythrume October 5, 2013 at 10:58 am #

      Thank you Dawn. Nice to know that I’m not the only one who feels like this but sincerely wish you weren’t sick. Rest lots, hope the flare passes soon. Jx

      • dawnhosking October 5, 2013 at 11:05 am #

        Thank you Jess, that is my plan and I have my fingers crossed (ouch) x

  2. Lou Burkett October 5, 2013 at 10:07 am #

    Oh Jess, so familiar – try thinking of everything and still have to deal with consequences. Hoping for a good recovery time and a really good birthday for Mr B x Lou

    • myjourneythrume October 5, 2013 at 10:56 am #

      Thank you Lou, really appreciate your kind wishes. Jx

  3. currankentucky October 5, 2013 at 12:09 pm #

    I hear you, it’s horrible when everything has to revolve around the beast but at least you have an understanding family who know you are in no way capable of going for the birthday dinner. (Our wedding anniversary is this Tuesday, we are celebrating with a takeaway this evening, first we must pop in to see a friend of my husbands and his wife briefly, they have been home from the US all week with their first born but I’ve yet to see them due to ME. They leave tomorrow so its a case of today or never. There will be no room for my sitting at a table to enjoy dinner afterwards so itll be takeaway, hopefully for two, if the nausea stays at bay!!! Honestly, we will be capable of climbing mount everest with no oxygen after all our dealings with ME). Thinking of you. Happy birthday to Mr B! xx

    • myjourneythrume October 6, 2013 at 1:52 pm #

      Thanks and a very happy wedding anniversary to you and your husband. I hope you managed to enjoy your little outing and takeaway without your dear friend getting to antsy! Xx

  4. thehomeschoolingdoctor October 5, 2013 at 12:39 pm #

    Wow. When you put it on paper, no–internet–you’ve done a lot! Not to mention the flu shot probably is actually really, really giving your immune system a workout, making you feel so badly! It’s making all kind of interleukins, interferons, scaling up production of proteins for antibodies, probably making sure it could make some mucous if need be to help the mucous membranes…It’s working hard to do its job, stealing where it must! Heck, my husband is “normal” and was a grouch for two days after his flu shot/jab. So you just hang in there and enjoy your coffee! (PS, I could have blamed the aflatoxin. LOL!) Hang in there. Thinking of you!

    • myjourneythrume October 6, 2013 at 1:55 pm #

      Oh dear, I’m sorry to hear about the grouch. That worries me as my other half gets his jab next week! You’re so right, my body is trying to deal with and fight the vaccine, no wonder I’m super tired and in pain! They’re all out for lunch as we speak but I’m so glad I didn’t go, after 40 mins of them being here I was shattered! Nap time for me!

  5. Jumping_Jenny_444 October 5, 2013 at 1:28 pm #

    I’m sorry to hear about your flare up. 😦 I can understand where you’re coming from though. I’ve had to flex and bend my life around my fibro and it’s no fun. However, it’s all about taking care of yourself and doing the best you can. Hope you feel better soon! xx
    Jenn

    • myjourneythrume October 6, 2013 at 1:55 pm #

      Thanks! You’re exactly right, we can all only do our bests. Nothing more is necessary πŸ™‚

  6. Linda Goodman October 5, 2013 at 4:37 pm #

    It is fall here in Vermont and there is spectacular beauty. My body is also not behaving but it is important for me to make room for gratitude. If the moment is bad it will pass and perhaps the next will be better.

    • myjourneythrume October 7, 2013 at 9:53 am #

      Yes! Linda,thank you for sharing a very good point and one I am trying to remember. Yesterday was an abnormally warm and sunny day for October in London (today we’re back to the more usual grey skies) and although I am hurting I loved seeing the sunshine filter through our windows. I hope your body resumes good behaviour very soon.

      • BONNIE JOHNSON October 7, 2013 at 9:44 pm #

        THOSE GREY SKIES CAN’T BE GOOD FOR ME/CFS. I TEND TO FEEL MORE DOWN ON CLOUDY DAYS! I’M FROM ALBERTA, CANADA–USUALLY LOTS OF SUN HERE, BUT WINTERS ARE HARDER.

      • myjourneythrume October 8, 2013 at 8:48 am #

        I have a light box that I use each morning from September through til April time. Really helps keep my mood up and energy too. I recommend getting one!

      • BONNIE JOHNSON October 8, 2013 at 11:46 pm #

        I’VE THOT OF THAT FOR YEARS–THEY’RE EXPENSIVE!! STRUGGLING TO GET WHAT I NEED NOW THAT I’VE USED ANY SAVINGS THE LAST 11 YEARS & WE’RE ”POOR SENIORS”! WOE IS ME-LOL. THAT’S LIFE.

      • myjourneythrume October 12, 2013 at 9:30 am #

        Yeh they’re not the cheapest things but well worth it. I got a cheap-ish one (US$60 I think) when I was in Philadelphia earlier this year visiting my sister. I didn’t want to spend a lot on it (the one I have here is a Diamond 3 and was Β£300 tho I got it on sale so it was much cheaper) cos of only being there for 6 weeks but it really helped with my fatigue from the jet lag. Maybe ask Father Christmas for one?!

      • BONNIE JOHNSON October 12, 2013 at 5:59 pm #

        LOL. FATHER CHRISTMAS IS A SENIOR & BROKE, TOO. WE’RE HOUSE POOR & STRIVING TO STAY HERE ON SMALL SENIOR’S PENSIONS. AT LEAST WE HAVE THOSE, BUT THEY HAVEN’T KEPT PACE WITH INFLATIONOVER THE YEARS. MANY R SO MUCH WORSE OFF, BUT AT LEAST WE AREN’T HOMELESS & LIVING ON THE STREET!! I HAVE A GREAT FAMILY WHO WOULD NEVER LET THAT HAPPEN. BUT STRUGGLING WITH HEALTH & FINANCES IS ALWAYS HARD.

  7. BONNIE JOHNSON October 5, 2013 at 9:48 pm #

    OUR LOT IN LIFE, MY DEAR. I SO RELATE. NO MATTER HOW WELL WE PLAN, WE CAN NEVER COUNT ON ANYTHING. LIFE REVOLVES AROUND CFS/ME & IT’S NOT FAIR HOW IT CONTROLS OUR LIVES. I’LL PRAY THAT YOU GET A SUDDEN REPRIEVE FOR SUNDAY. I AGONIZED FOR WEEKS ABOUT MY SISTER VISITING FOR THE 1ST TIME IN 6 YRS. I WAS SO AFRAID I’D BE TOO SICK. EVERYTHING ”CENTERED AROUND CFS” & THEN I MANAGED REALLY WELL–A MIRACLE OF SORTS! HER VISIT WAS VERY SHORT BECAUSE OF ME & I COULD HAVE HANDLED MORE, OR SO IT SEEMS! WE JUST NEVER KNOW. YOU ARE ONE OF THE MOST POSITIVE, CHEERY PEOPLE I KNOW. YOU DO SO WELL & THIS TOO WILL PASS. DON’T BLAME YOURSELF. I HAVE A BLOG I’D LIKE TO SHARE WITH YOU–”TURNING STRAW INTO GOLD”–SHE’S WRITTEN 2 BOOKS AS WELL. IF U R INTERESTED, I NEED YOUR EMAIL & I’LL FORWARD THE ONE FOR THIS WEEK TO YOU. LOVE, BJ.

    • myjourneythrume October 7, 2013 at 9:54 am #

      I love Turning Straw Into Gold! Toni is a pure inspiration. I keep meaning to order her two books, I think they would be very helpful to read. Have you read them? Sending love and good wishes to you.

      • BONNIE JOHNSON October 7, 2013 at 9:40 pm #

        I’VE READ THE 1ST ONE; THE 2ND ONE SOUNDS VERY INTERESTING. I HAVE TROUBLE CONCENTRATING ON ”INFORMATION” BOOKS!! DO BETTER WITH FICTION–LESS BRAIN FOG THEN! OF COURSE I FORGET MOST OF WHAT I READ WHICH IS SO FRUSTRATING! TONI HAS REALLY HELPED & I’VE SHARED A LOT OF HER BLOGS WITH FAMILY & FRIENDS–HOPING THEY READ & UNDERSTAND BETTER. I’VE SHARED YOURS AS WELL–LOVE YOUR HUMOR & WRITING STYLE. IT’S JUST SO NICE TO BE IN TOUCH WITH OTHERS TRYING TO COPE WITH CFS/ME.

      • myjourneythrume October 8, 2013 at 8:47 am #

        I’m exactly the same, find info books hard going, fiction is easier tho often a challenge too. I listen to audio books sometimes. I’m so glad you like my blog and it’s helpful. I get real joy from writing it.

      • BONNIE JOHNSON October 8, 2013 at 11:39 pm #

        I REALLY ADMIRE YOUR DOING THIS FOR US. EVEN AUDIO BOOKS WOULDN’T WORK FOR ME–MY ATTENTION WOULD WANDER OR I’D FALL ASLEEP!

      • myjourneythrume October 12, 2013 at 9:28 am #

        I have been known to fall asleep mid story and wake up to find the recording several chapters down and me not having a clue what’s going on! I’ve been falling asleep in all my rests and meditations this week, part of my flare I guess.

  8. Claire October 7, 2013 at 4:46 am #

    You express it so well – the frustration, the guilt, the sadness at missing out… I had a setback myself two weeks ago, it’s demoralising and Not Fair! Hang in there, be gentle with yourself. You’ll learn from it and slowly start to progress again.

    • myjourneythrume October 7, 2013 at 9:57 am #

      Thank you for your kind words. It is definitely NOT FAIR!! I hope your body starts to behave and you pick up again soon too. You’re so right, being gentle on ourselves is key.

Trackbacks/Pingbacks

  1. Gratitude 101: be grateful for small mercies | my journey thru M.E. - October 11, 2013

    […] am very grateful I saw sense and didn’t attempt to go out for lunch on Sunday with Mr B’s family, as much as it pained me to stay at home. It was most definitely the right decision. After 30 mins […]

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