What it feels like to be me today... (19 June 25)

I've always been bad at getting to bed early. But I'm getting there. So last night I'd had enough sleep. Yet my legs still spasmed and I had to wait after I'd decided it was time to get up to actually get out of bed. 

I helped the boys get ready, breakfast, finding items of clothing, enough to make me feel useful and needed still! ❤️

Getting myself ready wasn't straightforesrd this morning, on new medication. Little things that no one knows. But I did it, with help from a tight squeeze from the other half. ❤️

Everything done that I needed to and got dressed, FES (electric leg) on,  plus enough energy for HRT gel, teeth, even washed face and remembered to put deodorant on! Ready and out by 9.10.

Listening to favourite music on the way to weekly art session. ❤️

Finding it's the small things that make a difference at the minute. 

Remembered this quote "Everyone you meet is fighting a battle you know nothing about. Be kind. Always. " 

#ppms #ms #msdiaries #photography #ocrevus #disability #livingwithms #mumwithms #mslife #mobility  #mumwithcamera  #mumwithms #wellbeing #photography

Extra Effort...(30 June 24)

'Sleep over' for 4 11 year olds. 1.30 am last time they were told to go to sleep. Didn't hear them after that. 04.30 apparently when they went to sleep. 🤷 As long as they didn't disturb me!! 

Late Morning. Drag down for something to eat at 10.  Sorting breakfast, clearing up.  Making packed lunches for 4. Ham or cheese? 

Sort your bags out before gaming this morning! We leave at 12.

11am check all packed and kits on for rugby tournament. 3/4 kits on. 2 out of 4 packed. Mid game.

Wait for game to finish. Switch off. Whose socks are they? The black ones? White? Get your kit on! Whose trousers are they? 

Well done - 1 out of 4 ready, bags in hall. Slowly, slowly, sleeping bags packed, all sorted. 

Right , 30 mins until we leave...

15 mins boys!

5 mins!

Ok time to go!

Where's my sweatshirt? 1 out and in car.

Have you got a warm top to wear? 2 out.

Have you got the packed lunches! Yes. 3 ready. 

Where's your phone? Don't know.  Call it. It's switched off! Have you found it? No... 15 mins later..

4 ready in car. We are off! Only 14 mins late!

Get there. Bags out. Scooter out. Can we go? No, wait! 

Bags in. Off we go.. oh no... we can't park here on match days!!!!! 😡

Give kids to another mum. Thankyou!

Got back to car. Have a little cry. Get bags out. Put scooter in. Put bags in 

Drive 2 mins to correct spot.

Bags out. Scooter out. Bags in. 

Off we go. 

Get to stadium. Sort out disabled tickets which we not sent properly. 

And I'm here! Great view of little ones rugby tournament. Sunshine. I've made it. 

I wonder if he'll ever know what I go through in order to get to places. All the unspoken things, in order to get here. I hope not. I hope he just knows I love him. 

Diss engaging yourself from feeling....(6 October 2022)

I found myself posing three questions today.....do you allow yourself time and space to grieve for what you have lost? Do you celebrate what you have now  and what you accomplish? Or do you, through self preservation, sit and scroll, meaning you shut yourself off from the highs and lows of life? 

I took my littlest and friend to school today on their scooters. I was on my scooter, with dog in tow. I felt so privileged to be able to do this. 

On the way back I remembered walking the same way, on the grass, wellies on, just me and the dog. Dog off lead, running, sticking close as always. That was 12 months ago. Now I roll on my mobility scooter, dog on lead, no choice but to stick close.

I'm so thankful I can. I'm so unbelievably sad for what I have lost.

I come home and scroll. I could tidy, I could do my photography, I could sort and organise many, many things. But I have no energy to pick things up and actively do anything. I dont want to engage with my feelings - I'd just cry. 

And so another milestone is fleetingly acknowledged, but no more. It hurts too much to be thankful, because it admits the loss. So I scroll.

Covid 1. Facts and Adjustments. (14 April 2022)

So I tested +ve for Covid 19 this week.

Massive mix of emotions. At first, I was not even bothered about my health, just concerned re spoiling the family holiday everyone has been looking forward to so much.  Then my sister in law (pregnant, and over 250miles away) also tested positive. We were meant to go away together.

So much relief I wasnt the one to stop and spoil everything. 

The medical wheels started turning as I was offered and accepted antivirals to help my body cope. I didn't know if I was doing the right thing to take them but after 12 hrs I was very glad I had. 

I had what I expected, horrid achy flu symptoms, but the fatigue was on another level. Sometimes I was unable to stand properly or walk. At points I felt I had no control over my legs, they were a dead weight.

This scared me. It was another level of disability that I had not prepared myself for yet. 

I have PPMS, my loss of ability is like a ball rolling down hill, sometimes faster, sometimes slower, but I generally can see what's ahead. This was like the ball had just dropped off a cliff without warning.

Today though, I woke and was able to turn and sit up in bed with my legs helping me somewhat. People told me things would improve. I think I will be using my wheelchair quite alot, just need to be kind to myself and adjust my thinking on what can be done.

MS is a life lesson in adjustments.  The way COVID has affected me is obviously just another thing I will need to adjust to. 

#ms #mumwithms #mobility #covid-19 #disability #msdiaries #wellbeing #lifegoeson

How Lucky Do You Feel? (17 March 22)

I have PPMS. An incurable, progressive condition. I find it difficult to walk. I suffer fatigue and many other issues I wont bore you with. I had to give up a career I love due to my ill health.

It can drive me to tears. 

I was nearly in tears tonight walking out of tesco as I stumbled and tripped. But, I thought as I welled up, at least I have a trolley with food in. At least I have a home to go back to, that's warm.

I'm not in a war torn country, being forced to leave. I have my family and friends around me. 

So although I struggle, I will continue to struggle...because i am very lucky, in so many ways. 

Compromises. (March 22)

So, we moved in 18mths ago.

I looked around with a walking stick, no more.

Now I struggle with 2 sticks, and I'm definitely not lady-like on the stairs.

The other half wants to finish making the house ours. Correction, we both do.

But I have other priorities / concerns / considerations to think about at the same time.

We want the bathroom re-tiled... But soon (hopefully not too soon) I may need a chair or grab rails in the shower. I dont want the tiling done and then need stuff re doing because it's not suitable. But do I want a 'disabled' shower chair now? Not really!

I could get a bench seat fitted now but that is complete upheaval.

Have I got enough head space? 

Unsure.

There are grants available. But I'd have to get an occupatiional therapist to come over. They would definitely say a stair lift is needed, plus grab trails out front etc etc. None of this would go down well with those I live with...or me...but I'm resigned to the fact that these things will happen. Where as they can see me surviving now so, let's get on.

They don't see or understand the effort which goes into me 'coping'.

And so the compromise. We will get the bathroom tiled. Make sure its solid enough for rails when needed. Done. Leave the rails for another day. 

It's just the daily discussion that goes on in my head, every day  about everyday decisions.

Decisions for now and yet also for future needs which are inevitable. 

 

How do you live in the moment? (18 July 2021)

Be mindful they say.

Live in the moment. 

Meditate. 

Mmmm.

I try to be positive and live life to the fullest I can. But several things get in the way of a positive mindset.

Reminders are everywhere about the reality faced every day... how challenging it is just to walk from the sink to the fridge, getting changed from swimming, collecting the kids from school, normal things. Then regular routine things you have to do, meds, procedures that slap you in your face several times a day; so that no matter how positive your day is going you're rudely brought back down to earth.

Then there is the seemingly continuous downward spiral. Theres a poem I once read about the last times, and you don't realise at the time. It's about parenting, so the last time you have to lift your child the help them post a letter for example. You don't realise at the time that it will be the final time, the moment passes unnoticed. Last month I did a walk from my house round about. My husband does it most days and thinks nothing of it. I dont think I could do that now. And these things happen all the time, and I do notice. 

I love the things I do, and appreciate them massively, but it seems that happiness is often tinged with grief. 

But I know I'm lucky, and feel selfish for being down. I also want to be a positive, happy influence on my kids life. I find it hard. Another thing I feel I fail at often.

Live in the moment.

Happy for what is, sad for what is already lost....and what will inevitably be lost next. But not wanting to miss the positives of now.

Finding things tough going.

#ms #mumwithms #talesofamumwithms #disability #lifegoeson