I’ve tried to stay my level best and like to think I’ve been quite positive in the light of this MS diagnosis, but something happened in the last half hour that made me drop from ok to near rock bottom, and it was quite a simple thing.
I had a phonecall from my dad asking if I could watch the shopping when he got off the bus as there was ALOT of it, which was no problem, I managed to walk up my street and round the corner with relative ease, albeit much slower than I would normally be, but that’s standard now. So he took some bags, went home, and came back for more, I decided to carry the last couple so he didn’t have to make another trip, and I found suddenly my walking had dipped to a snails pace, I struggled massively to keep balance, had to stop twice in a 200 yard (probably not even that) distance, and had to be VERY slow over the tiniest bumps in the road.
The whole thing has brought me crashing down, MS is such a sin on life.i was feeling massively positive after physio etc and this has just brought me to my knees. Luckily not physically, although thats probably just a matter of time
Sorry to rant, I know everyone else is struggling too at one point or another, this is the only place I felt like I could rant though…
I do hope everyone is getting on well this valentines day, and thankyou for listening
Dave; you rant away my friend, that’s what this place is for!
And I really hear you, as I’ve experienced similar myself a lot more recently. Walking is becoming such a palarva for me, and so many people I know who don’t realise I have MS keep asking is everying is all right and I’m struggling to keep my mouth buttoned.
I hope you get back to your positive default soon; one thing that has helped my walking is just good old fashioned painkillers like Neurofen. I have a couple every morning now and they at least mean I’m able to walk around shops and go up stairs, albeit very slowly. You never know, it might help you too.
Re physio; mine is great but I keep forgetting to do the stretches she told me to do. I often think ‘what’s the point’. We’re all human.
The mad thing is in the 20+ months I’ve been having symptoms I’ve never had ANY pain whatsoever. I just feel so limited and trapped at the moment, I know I need to accept that I have to adapt and I’m trying to. But it’s quite disheartening when it takes almost 10 minutes to walk 150-200 yards.
Hi Dave, it’s such a shock when things like that happen… suddenly it’s like getting the MS dx all over again. Something to bear in mind is that PPMS does go up and down… so what you can’t do today doesn’t mean you’ve lost it forever. I’m really surprised by how my walking can change day by day, so these blips don’t necessarily last… in fact rarely last. It’s all part of learning to know your own MS. Might mean that you need to rest a bit more or just be careful not to overdo it. I notice you were carrying bags and walking… seems such a simple thing doesn’t it? But MS doesn’t like being challenged like that. One trip was ok, but going back for more bags was obviously not a good idea. Your still newly dx and does take years to get your head round it. I was dx 6 years in April and I still have the ‘OMG I’ve got MS!!’ moments. Remember… just take it a day at a time. Don’t think about tomorrow. Nobody knows what tomorrow will bring and that’s the same for everybody, not just us MSers. You’ll get your positive mindset back again! Just hang on in there, Pat xx
Oh Dave you’ve definitely come to the right place to have your rant. You’re definitely not on your own either. If it’s any help you may find that like me things get worse when it’s cold and damp but it gets better during warmer weather. I’ve seized up this last week and like you I’m finding it really hard getting around. CP was right about the painkillers, they do make a difference.
Don’t be too proud to use a stick or crutches for balance, they also help take pressure off if you get pain in your legs or hips. Remember we’re all here and will try to help where we can. Don’t let it get you down, we all have times when something happens and it really hits you hard, but then later something positive reverses your mood. Life with ms has its challenges. We all get low but you have loads of understanding friends here. Take care of yourself and have a bit of time out when you need it.
Thankyou guys, you’ve definitely perked me back up. I think that was just the straw that broke the camels back and I had a mini meltdown. I really do appreciate all the words and supprts, believe me it means alot x
Pat you’ve surprised me, I get those OMG moments but imagined that it would be temporary. I still keep wanting them to check my test results again and discover they’re wrong and whatever is wrong with me is temporary and will resolve itself soon. You seem so mature and accepting of your situation on here. I’m glad it’s not just me but wonder if like you I’ll always have those panic moments.
Oh Cath… Yes they got the dx wrong! They mixed the LP results up! It’s all in my mind! It’s not MS it’s Lymes disease! I’m just being lazy! If I just tried harder! OMG I HAVE GOT MS! Haha no it never goes away… but I suppose living with MS does start to feel normal…most of the time. Mature! If you could have seen me earlier today in tears while trying to work out how to use a steam cleaner, you would have thought again! (And stupid thing is I pay for a cleaner so I didn’t even need to do it). Trust me Cath, I’m as human as the rest of you. Pat xx
Hi Pam, believe me I had a few choice words for my legs as I was making my way back! You guys have made me feel alot better though, so glad I joined this forum x
We’re all human, the strangest frustrations cause naughty words or tears. It’s lovely knowing it’s not just me, in fact Dave your frustrations with your legs are probably similar to those of Pat with the steam cleaner and me with a box I needed to unpack but couldn’t get down to a manageable height. It’s all things we took for granted once, other people older than us manage and today we couldn’t. Tomorrow’s another day and add you said our condition is an up and down thing and hopefully tomorrow the sun shines on us.
Enjoy your weekend everyone and I hope you survive tomorrow’s storms as the sun’s coming out on Sunday, at last!!
Dave Ihope you don’t think I was trying to say your problems weren’t worth getting upset at. Hell, I’ve burst into tears because I couldn’t open the milk bottle or kept fumbling with the potato peeler when my hands hurt, which is quite often. Every day brings something to challenge us, either physically or mentally and it just sits and niggles until they all become too much.
It’s true that not every day is the same and symptoms vary all the time and we all need that rant, but we’re very lucky to have each other to rant with as we all understand and yesterday was your rant day, tomorrow might be mine, or it could be today as I’m taking my teenage daughter to choose paint for her bedroom. I might need you on standby.
Get your Dad a Wally trolley!! Can’t be good for anyone to carry all those bags ha ha. On a more serious note. It is hard to accept you can’t do something one day you Always have before I’m in the process of adjusting to this. Be kind to yourself , a saying I’m applying to myself at the moment is, grant me the serenity to accept the things I cannot change,The courage to change the things I can,And wisdom to know the difference. Like the others have said Mr MS seems full of surprises to challenge us everyday. Be kind to yourself and let others pamper you on bad days. Xx
My mother is 86 and walks much MUCH faster than me… she recently bought a walker and started telling me how great they are…"Yes Mum I know… I’ve had one for 4 years’!!! Ah well… such is the weird world of MS! Pat xx
Moments like that are just brilliant! The question is has your mum got it, to ram into people to clear her path! I always said that’s what I’d use a walker for when I got older! Hey guess what I don’t have to wait for the next 30yrs. Much to my dismay someone I call a friend asked me if I wanted one with a seat on yesterday,you can imagine what I told her to do with it. She is keeping it till I have my next fall was her reply.
Moments like that are just brilliant! The question is has your mum got it, to ram into people to clear her path! I always said that’s what I’d use a walker for when I got older! Hey guess what I don’t have to wait for the next 30yrs. Much to my dismay someone I call a friend asked me if I wanted one with a seat on yesterday,you can imagine what I told her to do with it. She is keeping it till I have my next fall was her reply.
x