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.
- I really don’t know half the time if it’s brain fog or I’m just the worst person ever with names…
2. As soon as I wake up I feel like I need to go back to bed again.
I won’t even have made it out of bed before I’ve come to this conclusion.
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.
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.
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.
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’ HERE 🙂
Hmm…in no particular order
Fatigue
Foot drop
Leg weakness
Right (dominate) hand weakness
Spasms
Cramping
Pain
Bladder and bowel issues
Depression
Ringing in my ears
Hearing loss
Ok, eleven is enough. I’m stopping now! 😞😞
I was the same! Had to make myself stop at 10. :/ It can sometimes feel like a never ending list! xxx
Legs that want to kick through every door!
That’s one I haven’t experienced. Mine instead have gone for feeling like they don’t want to do anything. xx
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 🙂
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
“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.
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
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
That surprised me too! I always just thought of people with MS having walking difficulties, I never knew the other stuff that could come along with it too. I have heard the smell one being a symptom. I hope overall your dad is doing ok. xx
I find that i sometimes smell things that aren’t there. It is as if my nose is remembering a smell and instead of just remembering it, i experience it again too. Weird!
That is weird. I’ve never experienced that! I can’t decide if sometimes that would be a nice thing? If it’s a nice smell. 🙂 xxx
No, it is very weird. I seem to smell ash trays and vegemite, so I am not sure if that says anything about me but I don’t smoke and only eat vegemite on the odd occasion. The brain is a fascinating organ, indeed.
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.
I really hope nothing else does decide to appear for you. Just feet not being happy must be frustrating!
I’m really glad you thought the post was informative. I was hoping it would be without being overload of info. 🙂 xx
Reblogged this on cabbagesandkings524 and commented:
if you’ve ever wondered what it is to have MS, this puts some of it simply.
Thank you. 🙂 xxx
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.
That sounds as though it must have been so difficult to live with. On top of that having to have transfusions. :/ I’m so glad it’s in remission now and hope it stays that way. Thank you for sharing your list too. 🙂 xxx
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
Thank you so much for your support and your lovely comments. 🙂 Lol, I think a lot is I’m just bad at names…. 🙂 xxxx
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.
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
ah, I think I’m fine till I stand up.
Hate the “inspiring” stories that show people in wheelchairs
Cure, really
We are all different
I get that a lot. I’ll wake up and feel almost normal and then I’ll get out of bed and it’s a whole different story! xx
Don’t understand “inspiring” stories that show people in wheel chairs. I have had this rotten disease 30 years and in a chair 10. There is nothing inspiring about it. I get out of bed in the morning and into a cold chair cuz my legs don’t cooperate but the pain sure starts once I move. The electrical impulses up my back and into the back of my head, no use of my left arm, blind in my left eye did to optic neuritis. I’ve lost friends and family. I’m too much for them to deal with . Yes I’m upset. I’ve been waiting for this “cure” 30 years. Not even close that I know of. Now I am 69. Sorry for the rant but not much inspiring about my life. I have all MS symptoms plus some.
Don’t apologise for ranting. We all need a rant with this illness at times!! It is so hard to live with, and I’ve only had it for just over 4 years. x Sending lots and lots of hugs. xxx
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
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
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
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
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!
I’m the same! At least 9 hours otherwise I know it’s going to be a bad day. Luckily I do love my bed. 🙂 xx
haha me too! xx
Mine would be
1. I’m still me
2. It is ok to to trip over oxegyn
3. Sneezing can be a journey all on its own
I love your post.
Love your answers, especially the first one. Sometimes I need reminding of that one. Thank you for taking the time to read my post and really glad you liked it. 🙂 xxx
Reblogged this on Dream Big, Dream Often and commented:
Dinosaurs, Donkeys and MS!!
Thank you! 🙂
You are welcome!
For me it would be leg weakness/heaviness, fatigue, finding words, and spasms. Great post!
Thank you for sharing yours and glad you like the post! 🙂 xxx
No.4 and no.10 are ones I totally agree with (I don’t have MS but other ‘invisible illnesses’ which this post seems to apply really well to). I love the photos! x
Thank you for your lovely comment! I have noticed that a lot of chronic illnesses do overlap with symptoms. We all seem to get the ‘but you don’t look sick’ too. 🙂 xxx
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.
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
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
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
Does anyone else have other chronic illness as well as MS? I was born with an extraordinarily rare formvof muscular dystrophy – all my life I have been unable to walk for more than 10 seconds before my muscles cramp to the point of immobility!! Excruciatingly painful and at times more disabling than MS that for me now is secondary progressive! ! Symptoms since 1987 diagnosis 1991! I am told that I am very lucky!! I guess that’s irony!!
I’m sorry you have to manage with 2 chronic illnesses. As if just the one isn’t enough! I only have MS but I do know others that have 2 or 3 chronic illness. :/ Thank you so much for your comments and I hope you’re doing ok. 🙂 xxx