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

Wheelchairs (July 2021)

So, as the world tries to return to normal, I find myself pondering electric wheelchairs. 

Many years ago a dr told me to get over myself and use a stick, it will help you save energy. He was right.

I find myself more and more realising that I dont do things, miss out, or push myself too hard which ends in disaster; either because I struggle to get home, or I am exhausted and unable to move - no exaggeration. 

I always said I dont want to be stopped from doing things. Last week I was unable to watch my son play his match. So I need to get over myself and get something that will help.

All that sounds logical and very straight forward. But of course, as with most things, things are not that simple. 

There is the emotional struggle, very selfishly - what it will mean for me. But also it is a massive big deal for my family. They didn't ask for any of this, but then, I suppose, neither did I.

I know they will get used to it. It will just take time, and adjustments. Understanding how much adjusting is also difficult for those around me.

Up until now, my stubbornness,  strength, and determination have enabled me to mask how difficult I was finding things physically. But I am no longer able to cover it up, so the jump for others to see is massive; from seemingly managing, to really not coping with basic mobility at all.

So, get it sorted woman.

#ms #mumwithms #talesofamumwithms #disability #lifegoeson

A Bit of Calm (10th April 2021)

A bit of calm...

So since October I have felt at 6's and 7's...no purpose, no work, exhausted from home schooling and then home schooling again. I have struggled, not knowing my role any more. Having more time but still being shattered and not knowing what to do.

This Easter week has been lovely, the first time in ages all off together. We sat one afternoon and watched a Star Wars film. Very much loved by most in this house. I swing from appreciating it, to stressing that there's too much violence for the small one. Today I watched more removed I guess and saw it differently. I gained clarity. They do talk a load of rubbish at times but some gems of wisdom it has!

 “I need someone to show me my place in all this.” – Rey
I know everyone just wants to find their place, I just think recent events have highlighted this personal battle for me.

"We're going to win this war not by fighting what we hate, but saving what we love!" - Rose Tico
I've been focussing on things I cannot fight, things I cannot win or change - when I need to focus on the positives and who I am lucky enough to have in my life.

It's Official - School's going back! (4 March 2021)

I've felt quite melancholy over the past couple of days and only just started to realise why.

It's been exhausting, and driven me crazy, but I will always remember this year with love. The year we stopped and spent time together.
Its helped keep my little ones little, with few outside influences, shut away from the world. Safe.
And now I have to let go.

I've had 3 big roles as I see it in recent years. Not unusual things, but everything feels like an achievement for me at times, even little things. Up to the summer I was working, and being a mum and all that entails. Then working from home, and home schooling and all that entails. Then keeping my little family going as the pandemic continued and all that entails,  including being a diplomat, a peace keeper, negotiator, plicatior, energiser, chef, cheif snack provider, activity suggester, mood raiser etc.

But now what? I've loved having my family wrapped around me. Difficult yes, but I've loved keeping them all safe and close, being responsible for their well being.
What will my role be when they go back to school? I've had to give up work, so things don't return to normality for me.

Yes I will be needed but not a million times a day to get logged on, to encourage a more detailed paragraph or forming letters correctly, or a hug when needed during the day or a snack to keep going. And that's as well all the other roles needed to be filled and already mentioned.

It's been so hard it's driven me to tears. I need it to be over, everyone needs life to move on, including me. But my role recently has been multi fold and intrinsic to everyone and everything. And, perhaps the biggest thing - it's allowed me to over look or more easily put to the back of my head, my seemingly constant decline.

What do I focus on now?

Day Zero (17 Feb 2021)

So today is Day Zero.

Exactly 11 months since we went into lockdown as a family I had my vaccine to protect against COVID 19.

A very bizarre experience. I felt I was looking at a film, but I was part of it. A year ago the scene would not have been a reality, only part of a fiction story.  But on a warmer, sunnier day than the snow we have had of late, I was directed through cones to the red marquee.

Lining up 2 meters apart. Everyone in masks. All treating these events as a matter of course.

Name. D.O.B. Time of appointment.  Hand sanitizer. Zapped with temperature gauge.
More queuing 2 metres apart. The foot fall at this one centre must be amazing. Directed to a cubicle. Explanation. Confirmation of details. "Are you sure you are still happy to have the vaccine?" "Yes please, very happy."
All done. "Thank you so much!"

Directed to wait. All seats sanitised as someone leaves, ready for the next. Someone gets up too early to go....he is questioned. There is something about the juxtaposition of our free society with this mass centre full of rules which must not be broken but is also full of positivity and hope for the future. Hope that this will give us our freedom back.

I waited my 15 minutes. Walked out into the spring sunshine, with a smile. Full of that hope.

#mumwithms #ms #coping #disabity #vaccine 

Focuss on the small stuff. (Dec 2020)

 

I've just had it brought to my attention again that we live in unusual times. Unprecidented times in fact.

All my posts pre March this year are to do with my normal. Coping with what's normal for me.  Trying to muddle through bringing 2 boys up, hopefully without the kids or myself going totally crazy. Slip into the mix my struggles with MS and my husband, who is amazing ( but I do sometime believe did come from Mars ) and you get my normal. Stressful, fulfilling, sometimes sad, often happy.

Since mis March 2020, you will find a difference. Mine, and everyone else's version of normal has changed. Things are not normal. And they havnt been for some time.

Coping with all that the pandemic has shoved on us, changed, taken away, has been an extra element you have to balance. Home schooling whilst working,  more family time (brilliant, but 8 months in a row can have it's stresses), stepping down from work, moving. All stressful. And the pandemic continues. The tiers continue to rise. The lock downs keep on coming.
The stress comes from every angle and you don't even realise it. Not really going anywhere for 9 months takes its toll on you and the kids. I won't go on.... but I could...and probably wouldn't stop this year.. ..

A good friend realised how hard I was finding it, and instead of agreeing and giving me a virtual hug, she helped. Probably more than she knows. She gave me a structure to help me move on. Day by day...

Make sure you do 4 things a day , no need to do more. (Immediately that let me off sitting in front of Four in a Bed in the afternoon thinking I should do stuff!)

The four things:
1 thing for you.
1 thing for health.
1 thing for family.
1 thing to pamper.

Very simple, but it's got me through the week. I wrote it out for the first couple of days. Its got easier. Family is easyiest, I do that before 7.45, and many more than 1. Pampering,  I have to work on. A long shower counts at the moment. Health could be an excersise class, going for a walk or sorting out prescription orders. And the 1 for me could be a coffee and a kit Kat listening to the radio or Sat snoozing in front of the tv in the afternoon.

But the small bit of structure to start from has really helped. Focussing on the small stuff. ❤

#identity #disabity #mumwithms #future #onestepatatime #coping #stress #ms  

What Makes You You? (Nov 2020)

 So many things that I thought made me me are changing. Are changing or have changed.

I am a teacher. I was a teacher. I have just gone through ill health retirement. The sense of loss is massive. I have only ever taught. Only ever wanted to teach. I feel like part of my identity has gone. Part of me. 

I am going through applications for disability benefits. Spending time talking through things I have to deal with every day. All things I cannot do. Ways my body let's me down. This focusses on elements which I don't want to define me. Is this me now? 

I have moved house. I am now in a different area. Different school, different playground pick up. I struggle in, what do these other parents at pick up see from behind their masks? A new parent? A new parent with mobility issues who uses sticks.? A disabled mum who stumbles? All are correct. Only 1 comes close to me. The me that I want to be addressed. A new parent. But is that the first thing that's seen?

What makes me me? What did I bring with me to my new house, my new home? What did I leave behind? As my abilities decrease am I loosing what makes me me? What is the core of me? My essence. Me. 

#identity #disabity #mumwithms #future #whatmakesme #ms 

Life begins at 40. (14 Aug 2020)

 So apparently I'm 40 today.

We are still in Lock down as a family. 5 months now. Our council area is in a second lockdown because people cannot follow guidelines. People's blatant disregard of the rules scares me. I like rules and would always follow them. But seeing how people just don't scares me as the number of infections is going up and the reason we should be being careful is for people who are vulnerable - me.

Life decisions have been made through this unprecidented time. I am giving up work. A part of my life I have always loved. But my MS is causing many issurs - which i will go into another time - and I have reached the end of working. I went for as long as I possibly could and i am proud of myself for that.

As well as this, we have decided to relocate. We are moving to be near family. So changing areas completely. As the eldest says, why did you decide to do it now, in lockdown? But it needed to be now to fit in for schools etc. More upheaval at a crazy time but hopefully we will be grateful later when everything slots into place.

So, as I was saying, I turn 40 today and with so many big, life changing decisions going on, you probably need to forgive me for a little mid life crisis wallowing!!

I joined an MS zoom yesterday on meditation. Never joined before. The person leading the group wanted us to connect with our inner child. We were to close our eyes and think of a place we used to love as a child. Then go up to the child version of us and tell them something you want them to know and hug them. It was at this point I started to cry. I'm crying now thinking about it. We were meant to be getting strength from the child's way of approaching the world, but all I could think about was the child version of me and what was in her future. The things she will have to go through, that no one should have to deal with before 40, if ever. I couldn't tell her anything. I didn't want to spoil her innocence. 

Don't get me wrong, I am proud of many things in my life. And so many things make me happy. I am lucky in so many ways. I share my life with my husband, my best friend, my soul mate. My kids are amazing ( when not killing each other). I just put up with alot along side the good. And I know everyone does, and everyone's load is different. But there is no way I would tell the child me that at 40 she would be dealing with the issues I deal with. 

It made me realise that I am strong, and I carry alot .

Anyway, life begins at 40, so let's see what it brings.

Lock Down 4 - 75 Days (May 2020)

So much time has passed and so much has happened. And yet nothing at all.
75 days into our lock down. We have the highest infection rate in Europe. And death rate. The R rate is near 1. If it gets over 1 the pandemic is growing. And yet the national lockdown is gradually, bit by bit, lifting.
It scares me.
Schools should be re opening. Our council along side 59 others have said no. Which shows me things are more serious still than the government would have us believe.
Then why are we opening? Because there is room in hospital for you?
I know many people are struggling with bigger issues or more pressing issues than me but the future scares me in many ways.
My family are amazing. They have shut down totally. No questions. But as people return to the new normal, when will the strict social distancing that I have to maintain become to much?
Camping trips with friends. Holidays with our extended holiday family? Even if such trips are permitted by national rules I have no doubt it will be unsafe for me to go. Just knowing this puts stress on me. I don't want to come across as negative. I know I do. But it's just realistic.
Just as decisions about my future and work. I have tried to be realistic. Until yesterday this was a real and internal struggle with me. I've always wanted to continue as long as I could. My balance and movement now is terrible. The position  my treatment puts me in with a reduced immune system is incompatible with a school environment where social distancing is impossible. But what if a vaccine is found? What if at some point I could do It? It has seemed like a choice being made to apply for ill health retirement rather than my hand being forced.
Then yesterday that changed. I had a phone appointment with a consultant. The upshot of the conversation was that going forward I would need to make changes. And that is it.
......
There is no way I can work. So there is my full stop.
Weirdly I felt a sense of calm. A sense of at ease. I think I had been battling a (made up) fight in my head. Could i go back? Shouldn't I? That just stopped.
No choice. I'm done.
And now, this morning, writing this the next day, I can cry.

2020 Lock down 3 (April 2020)

What scared me today was several things. My mum talked to me about my next infusion in September and should I postpone it if it will reduce my immunity again and the kids will potentially just be going back to school. Will it really all still be going on in 5 months times?
Someone in the news was questioning taking a summer holiday this year...
I read a news article saying that the Olympics, which has been postponed for a year might not take place even then if a vaccine has not been found.
All these things made me realise how long this is all going to go on for.
The enormity of that staggard me. Even though a thing i never thought would happen have happened. Gcse and A levels cancelled. Lock down nationally for 4 wks now. We as a family have done 5 wks.
I want to stand on a mountain with the wind  blowing so hard in my face that I can hardly breathe. Everything just feels very still. Almost not really happening sometimes.

2020 Lock down 2 (9 April 2020)

And so it continues. We are in wk4 now.
So much time to think.
We have found a new normal. A slower, less pressured way. I like it. More time to be.
My changes are mostly positive. I read my book, I shout less, I am more with the boys. We talk more. I do more excersise on line. Talk in zoom. Have more virtual contact with friends and family. The negatives are maybe that there aren't socially any  negatives. Which should be sad. I don't know that I miss working. I miss one work friend but that's probably it. I don't know if I will go back. My mobility is suffering as i don't go out. I am however really benefiting from this downtime in other ways. I have energy.
I made no.2's bed with him today. I had time to help him do it himself. It was lovely. Silly things like this are nice.

2020 Lock down 1(31 May 2020)

So, after my second infusion I asked for a letter to say it wasn't safe for me to be in school. Which the hospital gave me.
I then pulled my kids out of school. Something I never thought I would hear myself say. D is working from home. The first week I am sure everyone thought we were crazy. The kids were so accepting. Amazing really. As always we talked through our decision making with them and they were fine.

Then, a week later the government closed the schools. I am so pleased we did it early. I feel it was the right thing for us to do.

So, we are now starting our 3rd week of lock down. It is a very strange time. The world is in lockdown. Cases are rising. Deaths are rising. We have a news briefing by the government everyday. We are at war. But we cannot see the enemy.

In every situation there are positives and negatives. We are lucky that D can work from home and so we have not got employment worries. Many people have.

Ours are more superficial issues at the moment. We are not leaving the house and garden other than a dog walk for D and sometimes the boys. So booking a shop with the rest of the country is an issue. Sites have queues to let you on supermarket sites. I waited 1/2 an hr in a virtual queue to just get on a supermarket site yesterday. Up til 1.30 am to catch a delivery slot. Mad.

Knock and run used to be a game my nan played growing up. She'd knock on someone's door and run off. Now delivery people knock and run. They knock. Put the parcel down. Then run back to the van so they are no where near when you open the door. Mad.

We are discovering who the important people in our society are. And its not the rich bankers. It's the people who service our country. NHS hero's, Drs to cleaners. Supermarket workers. Carers. Teachers. All now titled 'key workers'. So this is a positive, recognition for some that have never had it.

And although we are all separate as lockdown continues we grow closer. WhatsApp s with family and friends. Zoom Pilates. Online forums for getting together. The amount of resources. Helps with the homes schooling (sometimes!!) You tube lessons etc.

Talking of YouTube the boys do a blog each night to log this special time. And it is special. Being able to spend this time together. Hopefully they will always remember it. It know I will. 

We live in uncertain times...(15 March 2020).

So, I have felt so lucky I am able to start this new drug. It reduces progression. I need to reduce progression to be around for all these developments happening I said to myself. A positive to take in a sea of negativity which MS brings.
But the timing couldn't be worse. I gave my first of 2 infusions as we realise corona virus is going to be an issue. But, I'm not usually one to panic, over react. My immune system will be lowered. But i am fine to return to my teaching the professionals say.

The Digital Age (11 July 2017)

11.07.17
Everything is digital and I'm sick of it. Present company accepted obviously, but I am. Music, text, whatsapp, searches videos, image searches.
I am going to stop Facebook for a while.. see if that helps my foul mood.
What else is conttributing?
Feeling emotional about no.2 starting school in September. Very very emotional and teary at times. It's the end of an era. He is so ready. I am so ready. And yet I'm sat here with tears in my eyes and a big lump in my throat...I've done it. Seven years of putting them totally first. Trying to cope with work, my MS, and being a mum, sorting out all no.2's medical appointments and needs as well as my own, making sure school stuff is always correct - I've only missed non uniform day once (!!) And it just seems to have reached a climax this year and this year is finishing next week..,,,, things are going to be easier...... less pressure....and I'm going to miss him so unbelievably much. 

My littlest.