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Reflecting on how life has changed

Good morning

I’m pleased it is a bit cooler. When we finally did get the heatwave on the East coast it was too much for me and wiped me out. I had thrown myself into my holiday jobs a bit too eagerly as usual and then hit the fatigue wall - as always!!

I’m recovering from a migraine today (always get one when it has been too hot), son’s car is off the road, so had to get up early to drive him to work at his journalism ‘internship’ and to cap it all the boiler has gone wrong. I had to wobble upstairs carrying a kettle full of freshly boiled water very carefully! My balance is not good at the best of times and I forget the last time I filled the kettle to the brim as I cannot lift it. So I needed both hands to hold kettle and had to use my bottom against the wall for balance - not a pretty sight lol. The landlord is coming round to re-pressurise the boiler later and hopefully that will sort it out. At least he deals with things quickly unlike the landlord at my previous house.

After breakfast I was feeling a little less wobbly and I had already arranged to meet a friend in town for a cuppa after dropping Jamie off. By the time I had walked to the coffee shop my feet were totally numb and I was walking pathetically slowly. OAPs were itching to get past me …

By the time I had finished my cup of tea and had a chat, my feet had recovered so I thought I might pop into a couple of shops on the same street which led to the car park. It took less than half an hour even at my slow pace. I bought a couple of items which were not heavy. However by the time I got to the car I could barely lift my feet off the ground and they were totally numb again. I had to watch the pavement very carefully as there are a few raised flagstones and I could have easily caught my toes on them if I wasn’t taking care.

Back in March, when I realised I needed a stick, I cried buckets and came on her for lots of support and advice before taking the sensible option and buying one and using it. Now I’ve come to accept that ‘Gloria’ is part of my life and it is unthinkable to go anywhere without her; the odd times I have tried have been a total disaster with me ending up tearful and feeling wobbly and vulnerable.

In short, previously I would never have viewed myself as ‘disabled’ but my opinion is changing. I am still able to get about but I am aware that it is becoming more restricted than it used to be. I had a relapse in March so there is still time for improvement but I didn’t think this relapse was as severe as the previous one 4 years ago and that relapse took me 6 months to recover from. I’m going to continue my daily yoga stretches and I’m keeping my name on the physio list to see what they can offer. In the meantime I’ll have days out and see how far I can push (safely).

Oddly I’m not upset or down - just reflective. It’s hard not to compare life now to how it used to be … but I am determined not to worry about the future. Live for today :slight_smile:

Tracey x

Tracey Made me smile reading that , you have a lovely attitude towards this thing we have , as I’m just starting out on this I can only hope I am half as positive as you. Thank you and good luck Gray x

Thanks Gray

My first year with MS was a bit of a nightmare (whose isn’t?) but as time goes on you learn to live with it and adjust. I’ve just had 3 really good years so I know that life can be good. I’m still hopeful that things will improve but if they don’t I’m still grateful for all the things I can do that I didn’t think would be possible in those early days.

I hope that anyone else newly diagnosed takes my post the same way you did.

Stay positive and keep believing that you will have some good times. I know life has been rough for you lately but I’m hopeful that things will settle down for you soon.

Tracey x

Hi Tracey,

Any reason you couldn’t fill and boil the kettle upstairs?

I learnt long ago that me, boiling kettle, and stairs just isn’t safe. I know you’re not allowed electricals in the bathroom (except shavers in specially provided sockets), but on the rare occasions the hot water’s failed - or the much less rare ones I simply forgot to set the timer - I fill the kettle at the bathroom basin, and boil it at the socket on the landing. It’s a cordless kettle - or at least, only the stand has a cord - you know the type. So it can be boiled on the landing carpet, as the hot kettle is never directly in contact with the carpet. Much safer than carrying full, boiling kettles up the stairs, anyway.

Tina

x

I love your outlook Tracey, thank you for this post - it’s cheered me up :slight_smile:

Laura x

I’m newly diagnosed Tracey and I too am inspired by your attitude towards life. I’m also thinking ‘oh yeah…’ at Tina’s kettle solution!

Hi Tina

D’oh! I didn’t think of that at 7am when I woke still groggy from the migraine and needed to get washed and dressed in time to drive my son to work. Oh well, it’s done now. I must remember that tip for the future. My kettle is also cordless so yes that would have worked very well as a solution, thanks for the idea. I think I need a list of these ideas for those times when my poor old brain can only think of the old ways round things! Our old house had a downstairs bathroom so when the hot water failed it wasn’t such a problem - the bathroom was right next to the kitchen through a tiny lobby.

Someone else suggested I should have filled a flask but my thermos flask lives at the top of the kitchen cupboard as it is used so rarely for picnics etc and I would have needed to get the stepladder out to retrieve it which isn’t an option when I’m wobbly.

Tracey x

Hiya Tracey

It so lovely to hear someone else who doesn’t think the world ended the day they were diagnosed with MS. You put it into words so well, which will hopefully give others another way of looking at life.

I decided early on that I had to get used to my life being different. I remember my neuro saying you might never feel normal again. My response to him was, if I’m not going to get any better than this, then I’ll just have to make this my ‘new normal’ and get on with it the best I can. He said he couldn’t say for deffinate that it wouldn’t get any better but having that outlook, making it my ‘new normal’ was probably the most positive reaction he’d had from telling someone that things might not get better.

I’ve always looked at problems with the attitude of - can I do anything about it. If yes, stop complaining and get on with fixing it, if no, well tuff, get on with it cos there’s nothing you can do.

Looking on here and getting help from seeing how others cope help loads too. Even for simple things like Tina being the voice of reason and suggesting taking the empty kettle upstairs…makes so much sense but it wouldn’t have crossed my mind to do that either. lol

Sue

x

Oh Tina, this did make me laugh out loud. I made a shaky trip up the stairs with a hot kettle yesterday to pour down the bath plughole with some washing soda. I planned it very carefully, including waking up and moving the cat so that I would not risk either of us by stepping over him, and getting the kettle in the correct hand for hanging on to the hand-rail. Not for a moment did it cross my mind to take the kettle upstairs empty and plug in in on the landing. But I will do that next time!

Alison

OK, at this point, I must confess - I HAVE carried the boiling kettle upstairs in the past! It did take a while for me too to realise: “Wait a minute, there’s both water and power upstairs! Why am I doing this?” I think it’s sheer force of habit. Because you (usually) only ever fill and boil the kettle downstairs, you assume that’s the only way/place it could be done. But when you start worrying you’re going to fall down the full flight of stairs, and land with scalding water on top of you, it does (eventually) prompt a bit of lateral thinking.

T.

x

We clearly all need a Tina living with us to help with that lateral thinking. I slept for another 9.5 hours last night and still have the same pain in my head, grr! I can cope with most things but the migraines wear me down a bit. It had better shift for tomorrow as I have promised a day out with Jamie as he works harder than me these days :slight_smile:

At least the landlord has equalised the pressure on the boiler so I have hot water. It is clearly a simple thing if you know how but the instructions on the boiler don’t include an idiot guide and I don’t dare to fiddle with anything that might blow me up if I get it wrong ha ha! He did it in 30 seconds with a smile and a ‘no problem, any time’ attitude.

Tracey x

I’m so glad it’s not just me! I felt so silly afterwards. My brother and his wife came round last night to look at Jamie’s broken down car (luckily brother is a mechanic) and Maxine asked why I hadn’t filled the kettle upstairs. It just didn’t occur to me at 7am when I woke up groggy, sweaty and thinking I needed a quick wash and refill the kettle so Jamie could have a wash too and we could leave at 8am.

I keep telling people that I take ditsy to whole new levels these days and they think I am joking but I’m sure that 10 years ago I would have been so much more sensible! I have so many stories that prove the levels of stupidity I have sunk to now…

Tracey x

Built myself grin studying which, there is a attractive mindset to this kind of point we now have, as Now i’m merely starting on this I could solely wish I am 50 % as constructive as you.