Tuesday, 21 May 2019

Busy times

It has been a busy and difficult week....

Firstly we finally did our (me, and my friends Rowan and Elaine - along with the PTFA) clothes sale at school. This clothes sale has used up the majority of my energy over the last month. Firstly, we had the clothes donated, then they came to my house to be sorted. Then I collected 12 rails from a church nearby (with my friend Nairn), and 400 hangers from the local shopping centre. It was a lot of running around for me, and a lot of sorting over the past few weeks. However, as much as I ached and felt tired, I got through it! The actual clothes sale wasn't quite as busy as I would have liked, but we made about £200 which was good. The whole experience was really full on, but I do feel a sense of achievement after it. I was worried it was going to put me off joining the PTFA, but it hasn't. I have realised that I need something to keep my mind busy once Ed starts school in September. Without something to keep my mind busy, my anxiety shoots through the roof! It's tricky though because talking to people I don't know makes me feel anxious, so joining the PTFA could be anxiety inducing....yet I'm doing it because I'm hoping it will help my anxiety! Catch-22. I think the reason I want to make myself do it is because it will hoping put me out of my comfort zone, ready for me to do hypnobirthing training and setting up the business next year. 
Only time will tell whether it helps.

Talking of anxiety though, there have been two brilliant documentaries I've seen recently about anxiety and depression, that I wanted to tell you about.

The first was Louis Theroux's: Mothers on the Edge, which covered mothers living on a mental health unit after giving birth. It made me feel extremely emotional because it brought back how I felt after giving birth and beyond.  The anxiety and awful depression, did, in my eyes, impact on my relationship with the children when they were young. I always felt a lack of connection because of the depression, and found it all just so overwhelming. As one mother said, you're taught that you'll receive this rush of love when you see your child, and for me, and her, it just didn't happen. Obviously I knew that I loved them, but the depression and anxiety got in the way of those feelings and just put thoughts of self-doubt into my head. It was a tricky time, and the documentary brought it all back. 

The second documentary, was Nadiya: Anxiety and Me. This followed baker and celebrity Nadiya Hussain as she started CBT therapy for her anxiety that she had been dealing with since a very young age. Weirdly watching it, made me feel more anxious myself. Nadiya suffers worse than me, but it brought those feelings home again. Like me, Nadiya found that she needed to keep busy to combat her anxiety and panic attacks. Luckily I haven't had a full blown panic attack for a while, but I often feel on the edge of one.  One interesting tip was not to breathe in and out to try and calm breathing because often this can make things worse. Instead you need to go to the source, of why you are panicking in the first place. As I learnt in my CBT training, you need to stop, take a step back, assess the situation and try and look at the feeling objectively. 

Now I've calmed down a bit though, I thought a spot of writing would help - hence this blog post. 

One great thing that happened this week, was that I met up with my friends from the Living with MS course I took last year! We finally got around to it, and it was lovely. 
It was so nice to be around people that you know really 'get' MS because they live and breathe it too. Hopefully we'll be meeting up again soon. 

What else happened this week......of course! It was Ed's birthday!! (I told you it was a busy week!)
My little man is now 4 and growing up at the rate of knots. It was a lovely day, and full of all things Lego and Star Wars related. I made his cake after a final clear out and tidy up at school after the clothes sale (I never want to see a rail or hanger again!!) and impressed myself. 
Ok, so as with all of my cakes, you never want to look too closely at the details (I can't ice a cake to save my life!) but Ed didn't seem to mind. He was just chuffed he got a Jabba the Hutt to add to his Lego collection. :D

So there you go, it's all been whirldwind of clothes, cake and birthday fun. We've got Ed's proper party on Saturday then hopefully we're going away to West Bay in Dorset again for a few days in half term. Living life to the MAX. :)

My not-so-little boy, with his not-so-little cake!

Wednesday, 24 April 2019

Talking to a child about MS - MS Awareness Week

MS Awareness Week (22nd-28th April 2019) is upon us again, and I the other day I ended up having a conversation with my daughter, Lib, about MS.

For any of you in a similar situation to me, how did you go about talking to your children about MS? Have you done it yet, or have you been avoiding it?

The whole thing used to give me the heebyjeebies to be honest, but as Lib initiated it, it actually all seemed very natural. Lib's at an age now (7) where she comprehends the consequences of things, and therefore has a much better understanding.

So what better thing to post during MS Awareness Week!

It all started when Lib picked the 'Our Mum Bakes the Best Cakes' book out of her bookshelf. This is a great story book the MS Society have created which has pointers and conversations that can be had about MS with a child when you are reading it. There's a free link to the book here, but it can usually be picked up from your MS Unit.

Of course the first question was:

Are you going to die because of your MS? 

I said no. For starters we don't know how anyone is going to die (though I quickly glossed over this point, because I definitely don't want her to start worrying about death, of all things). NB: Though having MS can reduce your life expectancy by on average 6-7 years (according to the MS Trust) compared to the normal population, this figure is reducing due to the introduction of better and better disease modifying drugs. MS is not a terminal illness, and there's nothing to show that my MS will be a factor when I eventually go. 

Where does MS come from?

Truth be told, nobody knows. They are doing lots of research to find this out though, and one day there might even be a cure. She obviously seemed happy and this thought.

Why do you have to use your scooter sometimes. Are you going to end up in a wheelchair?

Well, you know how my legs go wobbly? Well, that is caused by damage inside my body. When I get tired it makes my wobbliness get worse and I can't walk very far. That's why I use my scooter when we're out and about. I've had MS or 18 years now, and I'm not in a wheelchair, so fingers crossed it never gets to that.  Just because you may sometimes need to use things like a scooter doesn't mean you're going to end up using them permanently.

What makes MS?

Well, I get ill because your nerves have a special coating around them. My body is attacking this special coating which makes my nerves exposed (Mummy, what does exposed mean? For the meaning of exposed please refer to your nearest dictionary - I obviously didn't say that). Inside my body has damaged my brain and made things called lesions, which are like little scars. They stop my brain from sending the right messages, so sometimes my legs don't work very well, I have a lisp, my eyes get blurry, or I find it really hard to concentrate.

Why do your legs go wobbly?

The scars in my brain affects my legs, but really the thing that makes me most wobbly is something called fatigue.

What's fatigue?

Fatigue is like being really really tired and you can't move your body properly.

Is that why you can't run in the Mum's race on Sports Day?

Yes. It would also make my legs go stiff and tingly and I need to use all my energy on looking after you. :)

Finally the conversation has been had for now, and I'm happy that she feels confident enough to talk to me about it. All hail MS Awareness!

mother and daughter, MS life, multiple sclerosis,
Mother and daughter, enjoying life regardless! 

Wednesday, 17 April 2019

Over-doing it in the Easter Break

Well, we're one week into the Easter holidays, and today I. am. knackered.
It's one of those days where you feel like you need to prop your stinging eyes open with matchsticks.

However, I have done a lot, so there's no surprise that I'm feeling it now.

Firstly, as I mentioned before, we headed to Wales for 4 nights.
We stayed in a lovely Airbnb near Narberth in Pembrokeshire, and thank lordy the weather was good. We only had one drizzly day, which was a miracle!
We had lots of eating nice food, beach time and fun at various attractions - the kids loved it!

One day we decided to go to Folly Farm, and I bit the bullet and got the mobility scooter out to help me. The do have wheelchairs to hire there, but I don't know about you, but the thought of someone pushing me around makes me feel much more self-conscious.
It was a lovely day, but I was stiff afterwards. I can't seem to win! On the one hand, I need the scooter because my fatigue is too bad to walk all of the way round, yet because I've been sat on a scooter for the best part of a day, I end up being stiff and in pain which affects my walking anyway. I think I'd rather go with the stiffness though, because there's nothing worse than walking somewhere and realising you can't physically get back to where you started. Unsurprisingly, it makes me panic.

Here's me rocking the scooter with Libby. 

My experiences recently though have made me realise that I need to get a new scooter. It's fine because you can take it apart and put it into the car in bits, but the problem is that it's cumbersome, and the battery is soooo heavy. I would struggle to do it alone, and that's on a good day. Which doesn't make it great for independence. I've seen one that is folding and lightweight, but at £2500 it's an expensive bit of kit. Something to save up for though, definitely. Maybe if I had a less cumbersome scooter I would use it more and try and get out there a bit. Now that Ed's at an age where he doesn't run off willy-nilly (most of the time!) if I had a lighter scooter I could take the kids out on my own to one of the attractions near home, like the zoo. 

Anyway, aside from Folly Farm we went to the lovely beaches around Pembrokeshire, the Dinosaur Park (Ed in particular was in his element), and Saundersfoot. We took the dog on holiday too (as dogs were still allowed on the beaches) so he got some nice walks. It was just a really nice family time. 
Of course I ended up drinking and eating far too much, but that's the whole point of holidays right?!

Since we've been back we've been full-on in the house though. Do you remember me saying that as a project for when Ed starts nursery 4 days a week, I was going to decorate Lib's new bedroom? Well....I was impatient (as usual). 😁
Yep, since the holiday I've decorated Lib's room, we've put up her new bed, moved Ed into his new room, I've painted one wall of the new guestroom, we've put the bed up, AND cleared the little loft out. It's like I've been taken over by a new woman. My energy levels allowed me to do it all, which was amazing. Ok, so I'm feeling it now, but at least I feel a sense of accomplishment as I rest. 

Plus, the house seems so much more spacious and relaxing now that everything seems to have it's own place. *breathe a sigh of relief*

All in all, a bloody good holiday, and we've still got 5 days left! Of course, it does mean that I'll be stuck for things to do once Ed bumps up his hours at school, but maybe if things are sorted in the house I might actually rest!! Only time will tell. 

Me at Amroth beach