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.

How lifes seasons change. (28 Apriil 2017).

Day off, so sat  at the Drs waiting room again. Across the other side of the room was a new mum, and her tiny little one. I know she was a new mum, because of the way she held and gazed into her baby's face. A second time mum would be half asleep, enjoying the 5 mins quiet wait.
I was once there. I remember, it's all encompassing.
Watching, I realised, through the passage of time and choices we've made or things that have happened beyond our control, I was in a completely different place. How did I get here?
Last night we put to bed a bolshy 7year old in a heap of trouble and an upset 4 year old. There was no staring into eyes lovingly, although I did lie with them and  talk, once things had calmed down,
My visits to the Dr are now much more likely to be for me and my MS rather than a snuffly baby worry.
Where has the time gone? How have I changed from a new mum who questions each tiny noise, to a working mum of 2, with MS, struggling to keep abreast of medical appointments, managing medication, on top of managing what every mum manages at home, washing, food menus, food shopping, tidying, school bags done, homeworks done, partys attended. I go to a training session once a week which has helped me amazingly with my physical strength and balance, but apart from this, I cant remember the last time I did something for me. If I manage to get a couple of hrs at the weekend, I spend it trying to catch up with work.
My husband has balance. He travels to and from work alone, no kids, alone with his own thoughts. He goes biking, probably not as much as he'd like, but he goes. I don't have thinking space, let alone doing space. 
And then I end up moaning like this, and wonder when I changed. Life is full. But sometimes it seems so full that I wonder where that mum went, spending hours just staring into her babies eyes,  lost in thought, wondering, day dreaming. 
Then I just cry.
Then stop, as life goes on and I need to go and sort myself out before I go to bed.

Mini Egg before breakfast anyone? (12 Aprul 2017)

Before I got up no.1 was sat in time out, and I had exhausted the ways I coulfd ask him to stop calling no.2 an idiot, and told him to shut up. Horrible.
Sat in bed, wishing I could pull the covers over my head and go back to sleep.... oh I have to get up.
Eventually got both dressed and breakfasted, no. 2 in the car, no. 1 refused....he refused to get out when we reached town too.
Exhausted, not even done anything!
Town successful once we got in, park, less so, we lasted 10 mins. As I said to the bloke who took our parking space, as I passed him our parking ticket,...,.we paid for ages,  then we had a tantrum, so are going home.
Got home, no.1 refused to get out the car, next door smiling at me as I explained to him I would get into a lot of trounle if I left him to die in a hot car.
5 min break, shutting myself in the front room, with a chocolate and phoning my mum, whilst waiting for each boy to sit where I had asked and wait quietly for me to talk to them about thair behaviour,
Holiday? Really.

And they're off......(27 March 2017)

5.54, 3 minutes beofire my alarm goes off.,...
"Mummy!" I rush in..."I've wet my bed!"
Ok. Strip bed, strip child, Put wet stuff in wash pile (which is already massive).
Shower child off, dress in dry pjs. Tell him to get inro bed with the other half, who until this point is oblivious to anything.
Have the chance to go to the loo. Get warm top on so I can go down and have breakfast. My only alone time of the day.
" Can I come too mum?"
Sort breakfast for me and him. Realise tomorrow is the only day of the weekend a shop can be delivered, so put one in.
Get eldest up, make sure both have pile of clothes to put on, Make sure youngest has correct clothes for forest school and no. 1 has dress up clothes for charity day, and warmer ones if he gets cold. Cream no, 2. Dress him.
Send boys downstairs, call down to make sure other half is giving them breakfast, yes, thankyou, good,  loo, shower quuckly and dress,
Make sure book has been signed piano practice done.
"TEETH!" Find no. 1 doing no.2's teeth. ♥
Football...
Forgot football. Send no, 1 up to get football kit, He does, but throws it in hall. Make sure it, along with boots are in bag.
Fill waterbottle, look out money for chariy day.
Final trip to bathroom, My teeth, hair wet scraped back, no time for makeup.,,
"Put shoes and coat on NOW, " Unfortunately I don't think I said please,...,

Put yourself first...(8 March 2017)

The hardest thing in the world for me, and I know for many mums out there. But some mums manage it, without guilt, and are happier, more contented, better mums for it. But how do they do it?
Finding stuff difficult at the mo. Work isnt great. To be honest thats taken two big hits in recent years. Returning from matrrnity leave no. 2 its never held the same position in my life. And my friend leaving for promotion, whilst I was making mobility and access changes to my role, was just a reality check/ kick in the teeth really.
Medical appointments  coming thick and fast, and physically feeling I really need them is hard.
Trying to put those 2 things out of my mind, no, 1 is the kids. " You do too much".
Maybe I'm just hiding behind it a bit, so I dont complain too much, or try not to over think the me stuff. But perhaps I need to...

Spring (10 Feb 2017)

I see a theme here. Anyway....
Youngest wasnt great the night before last, His night was fisturbed, so my night was disturbed.  Last night was worse. Chatting til very late last night - life is full on at the mo...then youngest awake with temp af 12.30. I could have / should have slept til he woke again at 5. But I never sleep well when they are unwell, hear every turn, every snuffle in the next room. Every 'Mummy!' Is heard instantly. Anyway, then up with the alarm at 5.57.
Youngest still has temp and 'feels sick'. More calpol and nursery it is then. If he really is ill, being called home from work is better than not going to start with....
Both boys ready, shoes on, coats.....I'm going to be sick! And sure enough, he was.
Cue calls, to work, other half, so he can get home betimes to take eldest to football - can't miss it, Quickly get tub for further sick, if it appears and bundle boys into car..... the sooner the car ride happens after sick, the less likley sick will actually happen in the new car! !
No sick, Noel to childminder. Next to set lessons, accompanied by youngest who seems fine after calptol and throwing up once. Lesson set...and, relax!
No more sick appeared, lots of sleep, and a very high temp made for a cuddly day on the sofa. Able to reflect on spring.
Although its snowing, it felt like spring today. Positive, I lay and cuddled my sleeping child, dosing and enioying, knowing that I should be making the most of this special time and for once, not feeling as though I should get up and do jobs. When I dropped Noel off this morming I walked across the road with ease, not stiff, not jolty, not unbalanced, normally. All the work I am doing with H is really making a difference. And now I am sat quietly while the youngest sleeps and D is at football with the oldest. Cup of coffee in my hand.  For a moment the stars are alined. Spring. Positive.

Christmas! (28 Dec 2016)

So, lead up to Christmas, youngest said his knee hurt. Yes, it'll be fine, i say. Woken the next morning by him screaming in pain, cannot stand.
Bad mother alert, I think as I ring for a Dr appointment. Got an appointment at 9am. No time to have breakfast, just dress and go. Cue moaning and complaining from boys and screaming from youngest who doesn't want to go to Dr's.

Eventually get boys out, carry youngest. Get to Dr's, have to carry youngest which is not so easy as i use a stick. Eldest took my hand to steady me without asking.  Love .

Youngest was ok, fluid on knee, went with ibuprofen.

Run up to Christmas always smooth in our house.

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