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.