Just a moan and a bit of a request for a virtual hug really.
I normally have quite a positive attitude towards my life really. I have a great husband, I can still work (with major adjustments) and I know that I am far, far, far better off than many other people with MS. However, sometimes you have to acknowledge something that stops you dead as if you have hit a brick wall.
I know that I have walking problems but I had always just thought that I was slow and a bit wobbly" but today I saw a video my husband had taken and I ended up in floods of tears.
We have a new puppy and Dai has been putting together a You Tube video of him. One of the shots he took (without me knowing!!!) was a rear shot of me walking through the park with Bert on his lead.
I couldn’t beleive how awful my walking was - not only was I slow and wobbly, I was really stooped and I was moving like a wind-up toy. (I was moving just like Douglas Bader for those of us old enough to remember “Reach For the Sky” )
AND THIS WAS ON A VERY GOOD DAY!!!
Like I said, I know that I am very lucky compared to lots of people but sometimes seeing the reality really hurts. (Mind you, I didn’t complain about how big my bum looked which was what Dai thought I was going to complain about!)
Big hugs xx I understand what you have written and it reflects what I feel, I’ve a hit a wall and trying to get over or at least round it! What breed is your puppy? Love animals to the point of madness, I help at a Vets on a Saturday morning. This is what scares me, giving up working with animals. Sam xx
Hya… oh know what you mean! Sometimes catch my reflection in a shop window & I’m always shocked!
Also, when I get off my mob scooter and walking with stick into shop or something, I’m a bit shocked at how people come to open door, offer help… can’t do enough really. SO very nice of them & I’m not moaning about it … (& kills the myth that Londoners aren’t friendly)… but it does come home to me how I must look to other people.
It’s best to try not to think about it. And as Dai said, you would have previously moaned about big bum!
Use the ‘WTF!’ philosophy… you are still you!
Another thing, I live in sheltered housing so most of my neighbours are old people (some very old) & they get this too… in their heads they are years younger than they look so if they catch sight of themselves they are really shocked.
I don’t write this to say that you are like an old person (far from it!) but just to show that we all carry a picture of ourselves in our heads that is not quite accurate. It’s human nature. So it’s best not to worry about it & get on with enjoying life.
I’m convinced that I still walk normally but one of my dear friends says I walk differently now. I’m sure she’s wrong and until I see the evidence I won’t believe her.
Here’s something to show that everyone thinks they’re in better shape than they are, not just people with MS. There was an article in the paper yesterday describing an experiment to see how people perceived themselves. The researchers got a photo of each of the people in their experiement. They then made different versions of the photo, some making the people worse looking, some better, some lots better. They asked the subjects to pick the unaltered photo. All the mentally healthy (ie not depressed) people in the experiment picked a photo that had been altered to make them look better. The more confident the person, the more good-looking the photo they picked! Only the people in the experiment who were depressed had an accurate idea of how they really looked.
This suggests that if you have an optimistic view of how you look when you’re walking around, you are in robust mental health and you’re in the majority. I hope this helps - I also get the excessive helpfulness when I’m out and about that suggests I’m looking in pretty bad shape. I know I’m not going to be letting anyone video me anytime soon.
Yes, I always find it worrying when people start offering help. Or when they give you that look and then say ‘How are you?’ in a certain tone. It usually suggests that I look how I feel for once. I suppose it does make a change from the ‘but you look so well’ brigade!! We’re never happy are we?
I had forgotten about the ‘but you look so well’ brigade. It’s a few years since anyone said that to me and I’m happy about that because it was REALLY annoying.
I totally feel for you. Today has been quite sobering for me too for 3 silly reasons but all have made me feel low…
lady rushing up to my desk this morning to ask if I was ok, she saw me trying to walk to the car last night and wondered how the hell I was going to drive it! Had to explain that my husband drove, I just headed to the car before him as I knew I was gonna take a but longer to get there, drop-foot (more like stone-leg!) always worse towards the end of the day
Spent my lunch time trying to find appropriate shoes on the internet and settled on a pair of ‘hotter’ shoes… passed the post-it to my husband and asked if he’d get them for my birthday, look on his face said it all really! I am planning to ebay my shoe collection, I think he might just find that one tougher than me eek Remembered that I caught his eye in the office cos he could see my legs under the desk from where he was sat He’s so supportive but I think he’s gonna find me in shoes I’d imagine an ‘old’ lady in, pretty tough to be honest
tried to shave my legs this evening, with an electric razor this time to avoid getting blood on the bathmat again. Couldn’t even finsh as struggling to stand but realising I had more bruises on my legs than when I was teaching pole dancing every week kind of choked me a bit. When you bruise yourself on the pole it kind of proves your hard work, not your inability to avoid bumping into stuff!
Sorry to ramble on a bit but I can totally understand why that made you cry (doing it now just writing back to you), it really does crazy things to your head. I’m getting fed up with people telling me how brave I am, I’m not, I’m terrified!
Thanks everybody. Feel a lot better today after my wobble.
Sam. My Pup is a gorgeous Chocolate Labrador called Albert (Bertie or little-******* for short!) He is 15 weeks old and a complete handful for both of us.
Oh wow…a lab puppy…I have wanted one since my two yellow labs died 10 years ago but work and puppy ?? Nooooo. So we ended up with a much easier cat instead…now I’m at home full time my mind is starting to contemplate again… !! Oh and Sonia, I ebayed my shoe collection a few weeks ago as my shoe cupboard looked like a bloomin Laboutin museum…broke my heart but what’s the point ? Firstly, I’m not at work anymore and secondly I can only wear ballet pumps now. So I sympathise completely. And MrH felt the same as your hubby about legs, ankles and heels !!!
Mr Alison100 calls Hotters ‘incontinence shoes’ and pulls a face if he sees one of their catalogues. My sympathy for the other things too, although I would have been no ornament to womanhood up a pole, even in my prime! It is a total filtered word, how MS takes away so much that we love.
So, so true. If I was not resolutely in denial about what filetered word order I’m in these days, I really would go bonkers. It is totally hateful to be reminded of something one knows perfectly well but prefers, for very good reason, to leave alone. It would be a good idea to banish from our lives anything that records moving images, for a start. Also bady-lit mirrors!
Chin up, and thank you for sharing. This is something that clearly has touched a chord for many of us, me included.
I know exactly how you feel. It was a few years ago I taped myself so I could see what other people see I just sat there thinking OMG as I thought right now I know what people see when they see me as I did think I walked normally.
Lately when on holiday I needed to go to the toilet so I come out of my scooter with a lady who came out of a wheelchair the disabled toilet was right at the back of the ladies toilet I told her you go for its too far for me when I come out to wash my hands the lady was there and she passed me some paper towels to dry my hands. So it’s obvious to me people can see how much I struggle just to walk. I think I walk on until something like that happens. It ones to all of us one way or another
I gave in last night and called my Mum… “Do you still have that walking stick?”
So yes, very soon I’ll have a stick if needed, some ‘incontinence shoes’ (I going to order them in red though, it’s the most outrageous offering they have) and the chore of locating/remembering my ebay password!
Keep your chins up all, at least I know I’m not alone in trying to look fab even when I trip over.
Sonia - I have just ordered myself some lilac and mint crutches (I refuse to use NHS grey ones that scream disabled!) - what about getting yourself a really fab and funky stick? You could get a few to match different outfits - you can even get blingy ones with crystals on! I’m also ordering my new wheelchair in a colour (not sure what yet). If you have to use this stuff at least do it in style eh? Maybe with your shoe profits? Check out blue badge style website for some great ideas and links. xx
I have some lovely flats in patent purple and I have a red floral stick. I think I’m heading towards that poem about a red hat and a purple coat that doesn’t go!!! Who says practical has to be boring ha ha?!
On a serious note, it is so hard trying to find sensible shoes that don’t look like something that an 80 year old would wear. I have narrow feet too and my toes don’t grip properly so I have to have shoes that strap on very securely. That makes the search even harder especially with a limited budget
He’s so supportive but I think he’s gonna find me in shoes I’d imagine an ‘old’ lady in, pretty tough to be honest