10 things about living with MS

As it’s MS awareness month me and Dizzy thought we would do a little post on 10 things about our MS. MS is completely different for everyone and no two people will experience it in the same way but here are 10 of the ways in which it effects us.

  1. I really don’t know half the time if it’s brain fog or I’m just the worst person ever with names…

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2. As soon as I wake up I feel like I need to go back to bed again.

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I won’t even have made it out of bed before I’ve come to this conclusion.

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3. Supermarkets are a place of doom. Or anywhere that has artificial lighting, is too hot, too cold, too busy, too crowded or has anything moving at a moderate to low speed or above.

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4. My body hates everything. Being in bed seems to be acceptable but anything else makes my body grumpy. I always knew I was fussy but this is taking it abit far.

5. A late night is not being in bed by 10.

6. Walking anywhere is a major accomplishment! Especially if it’s outside, my head and legs can’t agree on what’s going on when being outside is involved.

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7. People that tell me they’ll be a cure soon drive me nutty. I’ve had so many people tell me there’s a cure just round the corner. I appreciate the positivity but it’s nearly 3 years later, I’ve been round the corner and it’s not been there yet!

8. Dizziness is now the norm.

9. An exciting adventure out is going to physio. This is currently our big adventure out each week, even though I do really enjoy splashing around! Dizzy doesn’t come in the pool as her coat is not water proof.

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10. I know I don’t look sick…

Feel the list could go on and on but we have stopped ourselves at 10! 🙂 What would be your top 1, 3, 5 or even 10 things about living with a chronic illness? Me and Dizzy would love to hear what would be on your list. 🙂 xxx

Also published on ‘The Mighty’ at: https://themighty.com/2017/03/how-multiple-sclerosis-symptoms-affect-me/ 🙂

 

44 thoughts on “10 things about living with MS

  1. trippingthroughtreacle says:

    Mine are: fatigue, left leg weakness, word finding difficulties, clonus (rhythmic movements of my legs in certain positions – lovely!), exteme heat sensitivity, weak left arm and hand, spasms, and difficulty concentrating.

    The ‘there will be a cure’ bugs me too… people have been saying it to me since I was first diagnosed in 1994! But I really hope that there will be one day soon 🙂

    Liked by 3 people

    • dinosaursdonkeysandms says:

      The word finding one is new to me, it can be so frustrating. I know I know them but they’re just not there.
      I think there will be a cure one day. I really hope so too. 🙂 It’s just when it’s said like ‘don’t worry, cure soon!’. 🙂 xx

      Liked by 3 people

  2. maljam2002 says:

    “You don’t look sick” and “Here’s the latest cure!” are mine – and I’ve only been on this MS journey for 2 months! D’oh!
    Thanks for your blog – I always appreciate what you have to say, and your insights into life the universe and everything – and a donkey! heh heh.

    Liked by 1 person

    • dinosaursdonkeysandms says:

      Thank you, I’m so glad you like my blog! 🙂
      I think it’s some sort of requirement of chronic illness life to hear these things. Even after only 2 months you haven’t managed to escape them. 🙂 I hope your MS journey hasn’t been too bad so far. xxx

      Like

  3. oceanoffear says:

    I don’t have MS but my dad does and I never knew just how varied the symptoms were. He finds stairs a nightmare, especially rough uneven ones. Also not sure if it’s due to his MS or not but some days he can wake up with no smell whatsoever, and can’t even smell stuff if he nods it right up to his nose

    Liked by 2 people

  4. bobcabkings says:

    Eventually, I will probably be dealing with a chronic illness, most likely, by family history, diabetes. For now, Bursitis is as close as I get. My top complaint about that is a foot (they take turns) not being happy about walking in the morning. Its not exactly a horror story, more of a preview of the show to come. Anyway, great and informative post.

    Liked by 2 people

  5. anne leueen says:

    I don’t have MS. About 18 years a go I was diagnosed with Systemic Scleroderma ( auto immune disease). It is now in remission but when it was bad the list would have been. 1. Joint pain and inflammation. 2. skin tightness that meant I could not bend my fingers , elbows, knees 3.. stomach bleeding that required transfusions. 4. fatigue 5. fear of complications involving my lungs , heart or kidneys. I have great sympathy for what you are experiencing even though I am not going through it myself.

    Liked by 3 people

  6. blackberryramble says:

    I am so proud of you always! Lots of love as ever. You can always lean on me or Mr S if you need help walking 🙂 PS. I have met loads of people who find names difficult. xxxx

    Liked by 1 person

  7. Felicia Denise says:

    Except for going to bed early, these are my complaints about Fibromyalgia.

    I’d have to add irritability, brought on by constant pain. When I get to THAT level of pain, I separate myself away from everyone. My family understands, God bless them, but no need to dump my bad attitude on them.

    Liked by 1 person

    • dinosaursdonkeysandms says:

      Constant pain must be horrible to live with. I think anyone would be irritable with it, I know I would! I think it’s getting the right balance, which I’m not sure I exceed with. I rely a lot on the people around me but at the same time don’t want to just be moppy and moany all the time either. :/ xxx

      Liked by 1 person

  8. Kerry-Ann Ferreira says:

    Goodness, I love your donkey!! Isn’t it strange how one illness can present itself in so many different ways…I’m all for keeping things exciting but I think MS takes it a bit too far😜
    I get an electrical sensation that runs down my spine and along the back of my head, numbness down one side of my body, balance/co-ordination difficulties, oh, and my personal favourite when I’m trying to look sophisticated in a crowd: the mind speaks English but the mouth speaks gibberish😳
    Great post…keep the donkey close! x

    Liked by 1 person

    • dinosaursdonkeysandms says:

      Awww, thank you. I’m glad you like Dizzy. 🙂
      Lol, MS definitely takes it to the extreme! It sounds mad when trying to explain it to people too ‘yet, literally can effect everything.’ You symptoms sound very similar to the ones I had with my first relapse. The electrical sensation was so strange, I still have all the others in some form but luckily that one disappeared quite quickly.
      Dizzy comes everywhere now. 🙂 xxx

      Like

  9. runninginmydreams says:

    Nice blog! Easy reading. Top 10ish = heat, catheters, balance, fatigue, talking, metal taste in mouth all the time, swallowing, people who try to make me feel guilty that I’m not doing enough to be as well as I can be because I choose not to follow the OMS diet =, people who email me new treatments like hookworms, CCVI, and stem cell transplant that I can’t have anyway as MS is not my only disease, People who say ‘well you look so good’ instead of ‘ you look good but how are you really feeling on the inside?’. BEST THINGS = creating an amazing sense of humour, being able to think laterally about how to achieve everyday things, learning about all the wonderful things out there to help us which do exist, meeting some extraordinary people

    Liked by 1 person

    • dinosaursdonkeysandms says:

      Thank you, I’m glad you like my blog! 🙂 That’s awful of people trying to make you feel guilty, you have to choose what’s right for you and your health. I did decide to follow the OMS diet but decided against medication when I was diagnosed. It’s things only you can know what’s best for you. It was lovely to read your best things list too. 🙂 It’s given me inspiration for a future blog post. 🙂 xxx

      Like

  10. unconventional wisdom says:

    Aww hon, that’s a lot of things to deal with. I have a different chronic illness but am with you on the “anything after 10pm is a late night”. Actually, for me it’s after 9pm. I seem to need a lot of sleep, and quite a bit of time to get to sleep. This is one of those things people misunderstand, as most people are tired and don’t get enough sleep, but for me anything less than 9 hours and I have a headache and can’t really function enough to do my job or drive. So, there’s one thing that’d be on my list!

    Liked by 1 person

  11. Climbing Downhill says:

    I don’t even know where to start. I’ve never listed all of my symptoms together before, and I’m now wondering how I’ve had ms this long (30 plus years) and have never done so myself or been asked to do it. I’ll have to do that sometime when I’m not pretending it’s not as bad as it is. At the top of my list is a secondary symptom – isolation. This great post and its comments are revealing to anyone not familiar with what we experience.

    Liked by 1 person

    • dinosaursdonkeysandms says:

      I sometimes find it useful. I especially did after my first relapse because I had 12 symptoms appear over 3 months and it was wonderful being able to cross some of them off over time. I now keep a general list just to check in with every now and then. I did find it useful making this one too even though I haven’t listed them all. I think sometimes it can be abit depressing though so don’t do one unless you feel it would be beneficial.
      Thank you for sharing your secondary symptom of isolation. I think the secondary symptoms are just as important as the primary ones but often get overlooked. My big one recently has been anxiety. xxxx

      Liked by 1 person

  12. billeisele123 says:

    What a great post! It’s hard to laugh in the face of MS, but you made me smile. My mom has been suffering for years now, and it’s nice to see a community of support building online. Best to you and the donkey! Bill

    Liked by 1 person

    • dinosaursdonkeysandms says:

      Thank you for your lovely comment. That’s made my day knowing that it’s made you smile. 🙂 I’m sorry your mum also has the condition and hope you’re both managing ok. I have found your blog and am following yours too. 🙂 xxx

      Like

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