Mid week thoughts, am I coming or going?

Ok, ok, I know what you’re all thinking. Looking through my blog at the moment thinking this lassy doesn’t know if she’s coming or going! One day her blog is full of positivity the next day it’s a post about being flat on her bum (with a bit of positivity thrown in because, you know, I’m a traditionalist). If I’m honest – I haven’t a clue! Not the foggiest. I feel so up and down at the moment I haven’t got a clue what’s going on. I wake up some days feeling fan-daby-dosey and other days I could just wrap my self in a fluffy blanket and watch Bridget Jones all day (first two are always my go to films, just if you ever need to know).

I’ve spoken so often now about changes happening at the moment and reminding myself to take it easy. The problem im finding at the moment is the tiredness, I’m getting spasms in my face, back pain that’s like an electric shock and such bad aches in my left leg im struggling to get up and down. I mean the benefit is having the office job, I don’t need to walk around much, but you know, it isn’t ideal. Going from being on top of the world to feeling so rubbish in the space of 24 hours is really effecting my mood and so the cycle continues.

I received an email just the other day from my MS nurse stating that I’m JC positive, so the meeting I have in a few weeks with a neurologist to discuss treatment is going to be interesting. They said if it came back positive that Tysabri would be off the cards but Lemtrada is being questioned because of history with kidney problems – but it’s also been stated by 3 neurologists that they want me on the ‘strongest’ (is that how you refer to them?) Disease Modifying Drugs. We will see though eyy.

I seriously need to remind myself that I’ve only known about my diagnoses since September. That is literally only what like 5 months? Ok now I’ve actually said that out loud it does feel like so much longer than I originally thought, but let’s just pretend for a minute that it isn’t that long at all. I don’t really think I’ve fully came to terms with everything either, just fob it off often as like ‘meh be reet’. So I don’t retract my previous post about it being a good year so far, because it has! It’s been a blast, but after 1 month down I think it’s time for hibernation? Yeah?

  1. One month down, eleven more to go
  2. When you don’t get enough sleep, your body goes a bit mad
  3. Counting down the days hoping this next appointment has answers

As a side note too, I did NOT anticipate how much tiredness would effect me. These spasms in my face are freaking me right out, twitchy lip, twitchy cheek – I’ve never had such sensations!

Anyway, happy hump day!

H x

15 Comments

  1. The best advice I can give you is there will be both good and bad days and it is ok to have feelings about it. Your doing remarkably well for someone who was diagnosed only 5 months ago.

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  2. I know it doesn’t help you much to say this but I’ve been struggling lately, and I’m realising I’ve not come to terms with my health issues, and I’ve been diagnosed/had them for longer than 5 months. That’s not long at all and even if it were 5 years I think we put too much pressure on time frames and how we’re ‘supposed’ to cope. It’s not easy, so I think you’re being too hard on yourself. Being ok with not being ok is something I find incredibly difficult. And tiredness can be such a horrible spanner in the works when it comes to emotions being all over the place, not to mention pain and the horrible spasms you’re having, and then the big question mark over your future treatment. I think you’re doing the best you can by just riding it out, and I’ll just keep my fingers crossed things are a bit brighter for you soon. Keep writing, keep reaching out, and please remember that you’re doing the best with a bad situation. Please take care of yourself and watch Bridget Jones as often as you need to! 🙂
    Caz xx

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    1. I think that’s what it comes down to isn’t it, doesn’t matter if it’s been 5 months, 5 years or 15 years we can all be far too hard on ourselves sometimes! Thank you so much for being so kind Caz, just need to keep reminding myself of all of this!! 😊 Xx

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  3. I get the exact same thing, last night felt really awake and this morning so sleepy I can hardly keep my eyes open! It does level out over time though, so just keep resting when you need it and watching as much Bridget Jones as you want. 🙂 Also, I was diagnosed 3.5 years ago and still have times when I don’t feel I’ve come to terms with it! :/ I hope the appointment goes ok when you have it. Sending hugs. 🙂 xxx

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  4. I still have my bad days and I am nearly 5 years out from my diagnosis. I still have to remind myself that it’s okay to feel bad/sad/mad about MS.

    Some days, when I am feeling awful (emotionally), it has everything to do with MS – in that I am completely incapable of controlling my emotions because the MS is causing the feeling of being overwhelmed.

    I am learning that having self-compassion helps me feel better most of the time – loving myself like I would love a friend experiencing the same thing.

    It gets better, then worse, then better… Because it’s a cycle you can’t control. But you got this! Just keep on soothing yourself and don’t forget to be gentle with your feelings. You are worth it.

    Liked by 1 person

    1. It’s all just a big learning curve isn’t it! I think we all are so easily hard on ourselves so much more than we need to be!
      Thank you so much though, you are completely right about just need to be a big more gentle on myself
      Hope you’re doing well!

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  5. I’m so sorry for your bad days, hon. The feelings of electric shock and stuff I get as well! I’m so sorry again. I know that I don’t understand fully what your going through but with all my pain issues I have been on bed rest. I just want to let you know that I think you are strong and I admire you for that. Remember there will be bad days and good days even if they both have some pain! You got this, girl!😍

    Liked by 1 person

    1. You are completely right! The good days sometimes seem better than they ever did once you’ve had bad days, reminds you to be positive about the smallest of things 😊😊
      To have someone as strong as yourself give such kind words is always so lovely, thank you again for being such a lovely human!! Xx

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