Today is a New Day

1 Oct

Well yesterday didn’t go to plan at all. In a nutshell it was a bad day all round.

It didn’t go to plan because I didn’t get my flu vaccination and it was a bad day because I felt physically awful. Pretty much an epic fail all round. Thank goodness today is a new day.

Yesterday started off badly with me waking up drenched in sweat, shivering and covered in goose bumps twice during the night. I woke up from very vivid dreams of me being back at law school whilst ill and trying to work at the restaurant job I had as a teenager. Not a calm or restorative night’s sleep in any way.

Come morning I woke up exhausted and achy. Achy beyond words. My ankles, arms and legs burned and ached so much they felt too heavy to lift. This was before I even dragged myself out of bed. On making it downstairs I slumped at the breakfast bar, the effort of getting onto the stool nearly too much. Mr B had taken the morning off work to drive me to my flu jab appointment. Thank goodness he was there. He made me my breakfast through a Q&A back and forth with me ‘so you need hot water in this cup for your salt?’, ‘yes’, ‘how much salt’ ‘half’, ‘half what?’ ‘half a teaspoon’, talking and making sense was hard for me. ‘You need cold water in this glass?’ ‘yes and then whisk hard to dissolve the fibre supplement’, ‘what goes in the bottle with the Ribose?’ ‘cold water’ and ‘where’s your muesli?’ ‘in the fridge’, ‘anything else?’ ‘just a cup of tea please’ ‘which tea?’ ‘green in the tea caddy on the side please’ ‘No wonder you’re exhausted, making your breakfast is tiring’ was his conclusion.  ‘Weak laugh’ from me. He has a point.

Having eaten it was time to hit the shower and get dressed ready to make it to my 10am appointment. Ah yes, I remember why I usually don’t get dressed until midday. My body can’t cope with that much activity that early. Shower and a rest lying back in bed and we were ready to leave.

All was going smoothly as Mr B pushed me into the pharmacy to my appointment. I went into the consulting room clutching my health questionnaire and Mr B loitered outside with my wheelchair. The pharmacist quizzed me about my medications. Amitritriptyline. Fine.  Cipralex, Okay. Melatonin, Fine. Levothyroxine, Okay. Dianette, Yes, and Fludrocortisone. Oh.

‘Oh’…never a good response. Turns out because of that drug the pharmacist is unable to give me the vaccination. That medication means my immune system is compromised. Errr I know my immune system is compromised, I have ME/CFS, that’s why I need the vaccination! ‘I’m so sorry, but I’m not able to give it to you’. ‘But my ME/CFS consultant, a neurologist has told me to have it…”But I only take 50 micrograms a day, it’s a tiny dose, I cut the pills in half for goodness sake’. ‘But I went through my medications with the pharmacist when I made my appointment’, ‘Well he made a mistake. I’m terribly sorry for the inconvenience.’ ‘But,,,,But,,,,’

I don’t think she quite grasped the inconvenience. A trip out with ME/CFS is, to be honest, an inconvenience at the best of times. Never mind when it is first thing in the morning on a day when my body is flaring, when Mr B has taken time off work in order to get me there. And all for nothing. Great. Total waste of time and what’s more important, a total waste of my precious energy.

So now I’m left trying to figure out if I am eligible for the flu vaccination at all or whether my specialist overlooked the fludrocortisone when advising me to get vaccinated. Queue fed up enquiring emails being sent off to both my specialist and my GP and numerous phone calls to local GP practices and pharmacies. So far no one has been able to give me a definitive answer. Fingers crossed I get a response today. I’m inclined to think the pharmacist got it wrong. Not being mean but she seemed a bit of a job’s worth and trying to protect herself. Fair enough I suppose…..

Thank you so much lovely blogger virtual friends for all your lovely comments on my post yesterday. I really appreciate your support and your views and I’m sorry I haven’t replied to you all yet, I will, it’s just writing this post has taken all my energy for now. My arms hurt so much. I shouldn’t have written this much, but I wanted to so I did. Yes stupid I know. Your comments just strengthen my resolve that the flu vaccination is a very important tool in protecting my recovery. May I ask a favour of you? Pretty please? Do you take fludrocortisone? Has it prevented you from getting vaccinated? Do you know anyone who does? Are you a pharmacist or a doctor, do you know about the interaction of this drug and this vaccination? I’m not asking for medical advice just canvassing opinion to support my case!

And now I must stop typing. My arms are screaming at me to stop, aching and burning. I’m slumped in my chair, it’s an effort to sit up. Back to the sofa I go.

Today is not yesterday. It is a new day and things can only get better 🙂 And repeat…Today is not yesterday. It is a new day and things can only get better.

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45 Responses to “Today is a New Day”

  1. heila2013 October 1, 2013 at 8:24 am #

    Wish you lots of reasons to smile today. Hugs from Israel.

  2. currankentucky October 1, 2013 at 9:48 am #

    So sorry to hear about yesterday, i’d be raging having gotten dressed (I stay in my pjs all day, only getting dressed to leave the house, too much wasted energy the dressing thing for me!), and gotten out and about for NOTHING. Jeepers, you need those questions answered, asap. I wish I could help but im afraid I dont take those meds but hope you get answers soon and also hope today will be a shiny new one. xx

    • myjourneythrume October 2, 2013 at 9:28 pm #

      I was raging, in a low energy kind of way. I sort of felt like it was all happening around me and that I wasn’t quite there. Does that make me sound crazy?! Fatigue I guess. My other half got enraged for me 🙂 xx

      • currankentucky October 3, 2013 at 12:45 pm #

        I can imagine just how mad you must have been, at least you had a voice to get mad for you. I see you posted a new post, must check it out and update mine re the dentist, back home now!

  3. dawnhosking October 1, 2013 at 10:20 am #

    Oh no, after all of the effort involved in getting there. (((hugs)))

  4. Ami Hallgarth October 1, 2013 at 10:44 am #

    Indeed, today IS another day! I admire your positive attitude despite very trying and difficult circumstances. The things I try to remind myself in such times are: ‘Nothing is fixed in life – this too will pass…’ and ‘Be kind to yourself’… Some days just seem to be doomed from the start don’t they?! Here’s hoping today is a brighter one 🙂 x

    • myjourneythrume October 3, 2013 at 8:15 am #

      They are great reminders, I need to be more open to change I think! Hope you have a bright happy day today x

  5. thehomeschoolingdoctor October 1, 2013 at 2:08 pm #

    Hadn’t heard of fludrocortisone as a contraindication to the flu shot. Let me know, please, what you find out. No hurry, though! Just get back to baseline! Thinking of you.

    • myjourneythrume October 3, 2013 at 8:16 am #

      I was hoping you’d reply as I thought you’d have an opinion and I trust you 🙂 You’re right fludrocortisone is not a contraindication for the flu shot. I spoke to my GP and he reassured me it was fine. Back to baseline is definitely the aim.

      • thehomeschoolingdoctor October 3, 2013 at 12:51 pm #

        Sorry you had to pack up and have your guy miss a day of work and get nothing. But–maybe the stars just weren’t aligned that day. Still, a pharmacist should have checked (or known her pharmacology a little better than that). However, who knows, perhaps there’s a reason for everything?

      • myjourneythrume October 4, 2013 at 7:45 am #

        There is indeed a reason for everything. Maybe it was to show me that although I can do two trips out in one week it is a very bad idea! Just reinforcing the pacing and patience lessons that sometimes get forgotten.

      • thehomeschoolingdoctor October 4, 2013 at 12:39 pm #

        Yes. Bad idea! I, for some reason, need perpetual reinforcement, too. It makes my husband so angry. “What do you mean you ate eggs again?–to test them. Quit testing them! You know. Now you’re just being stupid.” You just never know! Maybe your body has “healed” since the last attempt!

      • myjourneythrume October 4, 2013 at 9:35 pm #

        You made me laugh! I have the same conversations with my boyfriend! Why are you eating that, it’s bad for you! Well maybe I’m better with it now… Why are you washing up? Do you want to cause yourself pain? Well I was just testing how bad I’m feeling at the moment…..

      • thehomeschoolingdoctor October 4, 2013 at 12:40 pm #

        Long response lost somewhere through technology. Suffice it to say, I see your point.

      • myjourneythrume October 4, 2013 at 9:35 pm #

        Lol, think I got your long response, I hate technology!

  6. E. Milo October 1, 2013 at 10:20 pm #

    So sorry! God, i have experienced this:
    http://elizabethmilo.com/2013/05/30/milos-law-if-it-can-go-wrong-it-will-go-wrong/
    Actually, I see you already read this, so nevermind… Sending much sympathy. Rest up. X

    • myjourneythrume October 3, 2013 at 8:22 am #

      If it can go wrong it will, yep how true that is! Hope you’re having a better week xx

  7. tlohuis October 2, 2013 at 2:46 am #

    That sounds horrible. I know what you mean when you talk about the pain from fibromyalgia. I would be livid. I guess, you are a much calmer person than I am when I’m in a major flare, of which I am at this time. Sorry you went through all that for nothing, You know, I used to get a flu shot every year, for years, but for the past several years I’ve decided not to get one any more and I haven’t gotten the flu, yet, even with a compromised immune system even when my family comes down with it. I’ve got all this other chronic crap, but no flu for several years now. Knock on wood. I hope you get to feeling better.
    Soft Hugs,
    Tammy

    • myjourneythrume October 3, 2013 at 8:24 am #

      So happy to hear you haven’t had flu, that is great. I will knock on wood for you too 🙂 I’m often not calm at all! But I felt so drained by it all that it felt like it was all happening around me. My other half got angry for me tho! Thank you for your kind thoughts. Hope your pain and flare calms down really soon. Take care, Jess.

      • tlohuis October 4, 2013 at 7:55 am #

        Thank you so much, Jess.

  8. BONNIE JOHNSON October 2, 2013 at 7:39 am #

    ME/CFS FRIENDS! I WAS TOLD YEARS AGO THE FLU VACCINE IS NOT A GOOD IDEA. AS I’VE ALREADY MENTIONED, I HAVEN’T HAD A FLU/COLD FOR 11 YEARS & NO FLU SHOT. I USE ”THIEVES” ESSENTIAL OIL BLEND TO COMBAT VIRUSES–ON BOTTOM OF FEET WHENEVER I GO OUT IN PUBLIC PLACES OR HAVE BEEN EXPOSED OR FEEL SOMETHING COMING ON!! MIRACLE PRODUCT, WOULDN’T BE WITHOUT IT! CFS IS ENOUGH TO DEAL WITH. I FIND GETTING READY TO GO OUT THE 1ST HOURS I’M UP IS SOO DIFFICULT!! I TOO AM A HOUSECOAT ALL DAY PERSON. I DO EVERYTHING FROM MY BED, SO IT’S MORE COMFORTABLE THAT WAY. ON BETTER DAYS, I GET DRESSED & TRY TO ACCOMPLISH A FEW THINGS! TODAY WAS A GOOD DAY. BLESSINGS, FRIENDS!

    • Life Beyond My Window October 2, 2013 at 1:01 pm #

      So sorry you had such a rough day and hopefully today will be better. I too have been advised to NOT have a flu vaccine as it could exaggerate our symptoms and who knows what else. My doctor was firm on this, so I will not be getting a flu shot and will be buying lots of antibacterial had rub to keep in my purse.

      • myjourneythrume October 3, 2013 at 8:25 am #

        Even with the flu shot I’m going to stock up on antibacterial spray. Germs are everywhere! Deciding whether or not to get vaccinated is definitely a controversial issue with chronic illness. I wish you a ‘healthy’ and flu free winter.

    • myjourneythrume October 3, 2013 at 8:26 am #

      CFS is definitely enough to deal with! You said it Bonnie! It’s all about making the most of our better days without over doing it and ending up with a run of bad days from the effort! I need to look into getting some of this oil. Thanks for reading and commenting 🙂

    • tlohuis October 4, 2013 at 7:29 am #

      Bonnie,
      You sound a lot like me. No more flu shots for me, either. I, also, have CFS along with a whole list of other lovely invisible illnesses, so I understand that bit about just getting up and getting ready to leave the house for a doctor appointment. I spend most of my time in bed, as well. It’s where I’m most comfortable and I have everything I need all over the floor right next to my bed, where I can reach it, easily. Glad you had a better day today. Take care.
      Peace,
      Tammy 🙂

      • myjourneythrume October 4, 2013 at 7:53 am #

        Thank you for reading and commenting Tammy. The floor around our sofa is littered with all the things I need too, and it is where I will be spending my day today. My body is rebelling at my outings this week. But with each day and plenty of rest it can only get easier, I hope! Have a great day Tammy, Jess 🙂

      • tlohuis October 4, 2013 at 8:07 am #

        LOL I can only laugh, laughing is good, when I hear other people say that they have all their things all over the floor by wherever they are camped out. Mine is getting out of control and I about break my neck whenever I get out of bed, so I better get some energy soon before I hurt myself on all this crap, my “important stuff” as I call it. Yep, that’s the way it goes, we get out and then we pay the price and get even more days in bed. Ain’t life grand? LOL I’m getting a little delirious at this hour and with the sleep medication, you see how well it works, the pain medication and whatever else I took, can’t even remember. I hope you feel better soon.:)
        Peace,
        Tammy

      • BONNIE JOHNSON October 4, 2013 at 8:26 pm #

        ALL MY ”STUFF” IS IN MY BEDROOM; IT’S MY OFFICE, READING ROOM, TV ROOM & TRYING TO STAY AWAKE FOR SOME OF THE DAY ROOM! CFS IS QUITE THE ILLNESS. YOU KNOW IF YOU FEEL WELL ENOUGH TO GET SOME ERRANDS DONE, YOU’LL PAY FOR ALL YOUR EFFORT THE NEXT DAY OR MORE. BUT WE PUSH ON. DON’T WE?

      • myjourneythrume October 4, 2013 at 9:39 pm #

        We do push on don’t we. I think it’s in the female chromosomes!

      • tlohuis October 5, 2013 at 2:01 am #

        Yes, I guess we do. I also have fibromyalgia, which is the same way. When I’m in a flare, any little thing I do only makes things worse and prolongs it. I also have CFS so you know how that is, doesn’t matter if we sleep or not because we never feel rested.Then I have insomnia on top of CFS and a whole long list of other great chronic illnesses. I’m unable to run too many errands because all my energy, which you know isn’t much, is spent going to doctor appointments, physical therapy, therapy, and any other appointments that come up. I never have any less than 6 appointments every week. I’m a hot mess, let me tell ya. If I don’t laugh, I’ll cry. LOL

      • BONNIE JOHNSON October 5, 2013 at 2:12 am #

        I STAY AWAY FROM DOCS & APPT’S AS MUCH AS POSSIBLE!! NO WONDER U R SO EXHAUSTED!! I’D DIE IF I HAD TO DO THAT EVERY WEEK. I SEEM TO MANAGE A COUPLE OF OUTINGS A WEEK & IT ALWAYS TAKES LOTS OF DETERMINATION TO GET THERE. HANG IN THERE, GIRL!

      • tlohuis October 5, 2013 at 2:22 am #

        If I don’t go to all the appointments things will be much worse, you just gotta trust me on this one. Believe me, it takes every fiber of my being. Everyone claims they need me around, therefore, I must go. I’m hangin’ in here the best I know how and you better be doing the same!:)

      • BONNIE JOHNSON October 5, 2013 at 2:47 am #

        I KNOW–I REALLY FEEL FOR U. BLESSINGS.

      • tlohuis October 5, 2013 at 9:29 am #

        Thank you for the blessings. I need all the blessings and God knows what, right now. Blessings also to you.

      • BONNIE JOHNSON October 5, 2013 at 8:44 pm #

        I PUT IN A ”FRIEND” REQUEST ON FACEBOOK……

      • tlohuis October 6, 2013 at 12:53 am #

        Ok, thank you, Bonnie. As soon as I make it over to FB, I’ll accept.

      • myjourneythrume October 5, 2013 at 7:19 am #

        Keeping laughing keeping laughing. Don’t cry!

      • tlohuis October 5, 2013 at 9:33 am #

        Too late, but the crying is done for today. Back to laughing because I’m getting so damn delirious considering it’s 3:32 a.m. here. That sandman must be mad at me or something because he’s been passing right by me for I don’t know how many nights now.

      • myjourneythrume October 5, 2013 at 10:57 am #

        Delirious laughter sounds like the best option right now. I really really REALLY hope you manage to get some sleep.

      • tlohuis October 5, 2013 at 11:19 am #

        Not yet, my friend. LOL deliriously! It’s now 5:17 a.m. Sun’s gonna be coming up shortly! What the hell, I’ll just stay awake all day. Done it many a days! No biggie!

  9. Julie October 2, 2013 at 10:47 pm #

    So sorry that your day had to go that way. Is there any way you can have the specialist that recommended the shot give it to you?

    • myjourneythrume October 3, 2013 at 8:29 am #

      Thank you Julie. Yes getting my specialist or one of his team to do was next on my list. But thankfully my GP resolved the problem and I was able to just go to a local pharmacy. Thank you for reading and commenting, really appreciate you taking the time to do so.

Trackbacks/Pingbacks

  1. A 2nd Is Always Followed By A 3rd | my journey thru M.E. - October 3, 2013

    […] In the spirit of a “2nd is always followed by a 3rd” this is my third (and I hope final) post about the flu jab. If you haven’t read my first two (they’re gripping reads do check them out!) here and here. […]

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