Day 44 – What a sodding rollercoaster

You’ve got it, a bad day. Well a bad few days really, but they’ve only actually started to get me down today. I know it’s all about me being so impatient and wanting to be well before time, but no matter how much people tell me it will take time, it is so hard sometimes and gets me down so much.

The history: well after a busy weekend, this week hasn’t felt too busy at all. I got a sleep on Tuesday morning; Wednesday a friend had the kids all day and I slept for 5 hours; Thursday I slept for 2 hours in the morning, sat in the local park for an hour and then went to a friends with the kids in the afternoon; Today, got a 2 hour sleep, a friend made the kids lunch and then we sat in a soft play area all afternoon. Oh yes, and last night I went to bed before the kids at 6.45pm and slept till 7am!!!

The reality: I still feel absolutely, ridiculously tired! More than I have done for ages. I don’t think it is helped by the fact that my neuropathy in my feet has got worse too….my toes feel like they are broken/ thawing from snow chill.

I am so tired I just don’t understand it. I had moved on from needing to sleep all day when I stopped all my medications….so why do I seem to have gone about 5 steps backwards? That’s what it feels like anyway. And people keep saying that it is my body telling me what I need…well that’s just great, but I don’t want to need that…I’d just got used to the idea that life was starting to move forwards, that I could look after my own kids for at least some of the day, and that we could see the light at the end of the tunnel. Life was looking positive. And now it doesn’t feel quite so positive. Don’t get me wrong, I know it will get better (well the sleep issues will even if the neuropathy doesn’t) and I know one day, hopefully in the next couple of months, I will feel like life is more like normal, but I need that now.

Today wasn’t helped by my gorgeous girl. We were lying down on the bed talking before she went to bed and she asked me if I would always be poorly….that she didn’t want this to have happened to us…..and words I can’t bring myself to put down about basically me not dying. The poor thing had me burst into tears on her and hug her so tightly. To which she just calmly told me not to be sad and hugged me back, smiling the cutest smile. How do they pick up on these things? I had to tell her that I would always be poorly but hopefully wouldn’t have to always go to hospital and that the reason I had gone in was so that it would hopefully be a long time before I’d have to go back and stay there. God I so hope that I am right and that I don’t have to go back for a number of years…it has obviously hit her somewhere in her little calm exterior. So that is probably why I am now blubbing my eyes out writing this…in fact probably why I’ve blubbed lots all evening. Me being stuck in bed tired, makes life so much harder for them. So much less normal. And that is why I want it back to normal NOW, and not in the 8 weeks everyone is telling me it will take. That is why it doesn’t matter what anyone says to me, it makes me feel rubbish to be so tired and incapacitated. That is why I feel so sad tonight.

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9 responses to “Day 44 – What a sodding rollercoaster

  1. Oh Debs!

    It is a sodding rollercoaster, isn’t it?! I can’t imagine how hard it must be to have young children and get myeloma. It’s quite hard enough without children. I totally understand your desire, need even, to be well right now and there’s nothing anyone can say to make it better.

    In the bigger scheme of things though, being so young, you are likely to get a long remission… so they keep telling me! So a few more weeks is just that and then you can spend loads of good time with your children and husband and forget about hospital and dying for a long time

    I wish I could say something more profound to help… but I’m so not profound right now – struggling with my own rollercoaster! My thoughts are with you and I wish you strength and courage to get through this difficult time.

    Jet x

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    • Thanks Jet.
      Hope your rollercoaster isn’t too rough for you…I’d seen you went back in so I hope you’re recouperating nicely now.
      I know that it is all about rest…..so hard though for us active people!
      Debs x

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  2. HELLO! (Imagine that’s in a size 72 font and bold) – Busy weekend! For the next little while you have to accept that a busy weekend doesn’t just mean being ratty on a Monday it means you spend several days catching up. It’s the whole don’t run before you can walk thingie. Like you told your little one this means that you can stay out of hospital for a long time and if you HAVE to take it easy now to get that long time then it’s worth all the frustration. (Plus the fact that once you’re back to full steam you will at some point think it would be nice if you could sit back with your feet up whereas now that’s the last thing you want.)

    And now I need to be careful getting off my soap box in case I break anything – don’t make me get all lecturery again it doesn’t suit me! I’m more the ‘let’s feed the small furry family member lots of Rodeos (twirly treats) to see if his poo comes our twirly’. So far it’s not working ;D

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  3. Debs You have always expected scenarios like that with your little ones. Kids are very resilient and although they can also be quite perceptive, things do not affect them just as much as you imagine, tho’ I’m sure your daughters thoughts and fears are very real and should not be underestimated. You will always be bubbly in these circumstances so don’t expect anything else, it’s only naturAL. Good to hear that things continue to go well (apart from the neuropathy and fatigue of course) I am suffering from both as well at the moment and it’s not a lot of fun!. Just continually want to lie down and rest. Consultant has confirmed that it’s the Velcade.

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    • Thanks Cameron.
      Just you be careful with the velcade…don’t be stubborn about staying on it if the neuropathy gets worse…it really isn’t worth it. My consultant was saying to me today that there are people who pretend it isn’t that bad and then end up with really really bad pains. I think he thinks I stayed on it a bit too long.
      Take care
      Debs

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  4. There is a FaceBook group for Multiple Myeloma and perhaps those in the group have some ideas for dealing with the neuropathy… I’ve heard of various things working, but I’m a caregiver, not a patient, so it might be helpful for you to request entry and share your request with them.

    As for the blubbing… hormones are also being affected by all the changes going on in your body, so you are quite likely to have ups and downs even without having a busy weekend. What can anyone say when you are feeling lowly? Probably not much, but hope it makes you feel better that we are listening at least!

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  5. https://www.facebook.com/groups/108654495840465/ Here is the link for the FB group for MM, if you are interested…

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