We did it!

Well, we did it! We had a successful, fun and enjoyable 9th birthday party for my eldest daughter. I am so pleased that we managed it and it hasn't knocked me out too much. Her friends are so lovely, they were no trouble at all and played nicely together and the bouncy castle was, once again, a huge success. The weather was glorious, at least 28 degrees and sunny, despite all the forecasts telling us it was 22 degrees and raining - most odd. And of course, the help from friends and family was invaluable and much appreciated.

The key was and is balance. I know I keep going on about it, but it's been a really hard but interesting lesson. I'm not as fit as I was, my immune system is busted, I tire quickly, my legs don't work much and I need to accept this means I can't do everything I want.  Unfortunately, I didn't make it to Sports Day and so missed everyone and my youngest's races, but I got some recordings of her taking part meaning I didn't feel completely left out. And we spent a couple of days preparing for the party in short bursts of teamwork. And I spent days slaving over the cake... can you tell?!

So, all in all, a great weekend so far! And it looks like someone is about to get another early birthday present (her actual birthday is in the week), lucky thing...!

Improvements!

Yay, I'm getting there, back to some sort of normal just in time for a heatwave and/or treacherous thunderstorms. Sleep has been the most useful; this week has been the start of my 'lying in' till 9 am two days a week and that has helped massively in both getting enough rest and getting that natural wake-up. So I am moving now to focus on positives once again and get better!

There's definitely a theme developing here...

It's my youngest's Sports Day tomorrow - fingers crossed I can go (and that it isn't cancelled due to heat) but my main goal is my eldest daughter's birthday party on Saturday - with extra fingers and toes crossed we aren't struck down by lightning. However, back up plans to the outdoor party idea have been set in motion....

Both girls are doing fantastically at school, home and play, despite everything, so I am super-proud. And my husband has been and is amazing. And friends and family are wonderful too. ©

And another positive is that I've made another donation to the hospice (via JustGiving) thanks to everyone's generosity as well as get a few things that have really, really helped with my recuperation. ©

What a Fabulous Weekend!

Well, I've gone from needing to sleep, to a good rest and sleep to a fantastic weekend of fun! All in moderation, all balanced, all good.

My mum had friends over from the States so she had a little bash for them on Saturday, inviting a few close friends and it was lovely to see everyone. It was completely coincidental that it was near to 4th July, but a happy one for a double celebration. I got wheeled over to her house and back which was interesting, keeping out of the way of nettles and twigs on the footpaths, but we did it and we'll do it again.

This was followed on Sunday by another lie-in and then my youngest's birthday party. Her actual birthday isn't until August but over the years we have found that people often don't turn up to parties in the summer holidays.  So now we do them for her before the summer term ends, and this was literally the only available date! Again, everything in moderation - we prepped as much as possible the days before, ensured the girls helped out with some of the more fun stuff like the party bags and then 'all' we had to do on the Sunday was finish off things like the catering, decoration and the highly successful bouncy castle! And the cake - all done by my own two hands, oh and Mr Sainsbury's. This is one of the things that I would have done from scratch in the past but the compromise is necessary. And no complaints of course - she wanted Monster High and she got it!

The party was amazing, the children were delightful, my friends and family were perfect. I couldn't have asked for it to go any better so thanks to you all who were there! Having this support, I feel, is another key element and I am very lucky.

I had a fairly decent night's sleep and nap this morning so I'm okay-ish. The antihistamines have arrived so I'll give them a go tonight and fingers crossed they will help. Got another couple of busy weekends on the horizon so I need to recharge as much as I can plus of course there's everyday, normal life stuff too, to be getting on with. It's amusing me that I'm thinking the summer holidays are going to be quiet and give us a chance to keep recovering - surely it should be the other way round?

Onwards and upwards and....

Rest.

I am so thrilled that I am able to get out and do more, but it's been taking its toll and I need to be aware of that. Apparently everyone has an energy bank and needs to be careful to not use it up and ensure it gets replenished, and I have been on the brink of no energy in my quest for getting on with life! I've not been sleeping well either - could be the weather with its mugginess and prickly heat and waking me up, could be the fact I hate getting put to bed at a certain time and my body's rebelling, could be me thinking too much at night (I'm not worrying/ stressing though). I am also being woken at 7.00 am every morning apart from Sunday which is totally unnatural - I need more 'natural' wakings and lie-ins. So the last couple of weeks have been fabulous with lots of end of term stuff with school and the PTA, work, family outings and brilliant visits but tiring and a new balance needs to be found.

Hopefully, the care agency can help with giving me a lie-in once or twice during the week, with them coming a little later in the morning. They're sorting the logistics of this at the moment and I hope to hear tomorrow or Friday what they can do. I'm also going to get some drowsy antihistamines to take before sleep; the hospice nurse is sorting this for me so I don't rattle too much with my various pills. So please keep your fingers crossed that I can sort these energy levels, get a decent sleep pattern back and carry on as per usual! There's too much I want and need to be doing right now and I don't want annoying tiredness to stop me!

A Happy Easter Post

The last couple of posts have been a little doom and gloom so I thought I would post about the brilliant Easter weekend we had!

Good Friday was fab in that we were able to go to a good friend's house for a meal and catch-up over a few drinks.  It's still slightly nerve-wracking to go somewhere 'new', as we never know how easy it will be to get into somewhere - whether the wheelchair will fit, if there are unexpected steps or if they're too high for me to step over, if there is suitable parking etc etc. But we measured everything and it seemed fine until we discovered I measured the wheelchair wrong!  Luckily we figured it all out so I could use the walker to access her house and actually, this was a brilliant lesson in that, even if it goes a little wrong, we can still manage to resolve it with a little thought and teamwork! A great time was had by all.

The next day we had our first barbecue of the year at home, which is always a favourite of mine, especially when it's combined with several of my oldest and dearest friends and family! This was the first time since I have been back that I have sat in our garden and it was easy to get there and wonderful to be there.  The weather was okay; I'd say typical British BBQ weather (I won't mention getting out the blankets and cardigans...). It was such a treat to be outside with everyone, enjoying gorgeous food, drink and company.

Easter Day was brilliant too.  Loads of chocolate and my mum and sister came over for a meal cooked by my mum.  The weather was appalling so we did an Easter egg hunt in the house, which worked quite well.  So well that we keep finding them now!

Yum!

And finally, Easter Monday we chilled and got everything ready for back to school for the girls, and back to work for my husband. I've been signed off work for a month to recuperate, so I didn't have anything to get ready.

So despite the setbacks and busy, annoying week early last week, it was redeemed by a fantastic weekend, thanks to my friends and family.

Thank You

I want to give a big thank you to everyone who has supported me: family, old friends and new. I have had wonderful messages of love and encouragement, offers of help, gifts of equipment and treats and of course there is the funding page. Using the latter as a basis, I made what I hope was a really good donation to the hospice and there will be more to come, from me at the least! I have also purchased several items that have meant that I am able to function more independently and that have helped progress my mobility more quickly than if I hadn't had them. Or even just a few items that make my life that bit easier and more comfortable.

If it hadn't been for my friends and family, I wouldn't have been able to do any of this so well so thank you very much!

I'm getting more mobile!

I've been home now for just over two weeks and we have been slowly adjusting to everything in the meantime. Every day, the carers come in to get me up, into my back brace and washed/dressed first thing. Then I either chill out on my chair or sort things; have also had lots more visits from professionals to ensure everything is as it should be.  The carers come back at lunchtime to get me standing and I go for a little walk - every day, not a great distance but further than the previous day and for a little bit longer. It's getting easier to stand and walk with support. And then in the evening they get me back to bed and remove my brace.

We've also had some lovely visits from friends and family which is always good, especially when I am sitting up in normal clothes rather than trapped in a hospital bed! And I've managed to do some work which has been brill - both for my employment and for the PTA, which gives me confidence that my brain hasn't melted with everything going on. I hope that next week I can build on this some more.

I have had two really good things happen this week though with regards to my mobility. Firstly, my wheelchair has arrived which means I can get around the house and out into the garden. Technically, it's an indoor chair but can be used briefly on flat pavement so using it on the garden path is fine. I'm also getting better at driving it. Bring on BBQ weather!  And secondly, I learnt today how to get in and out of the car thanks to the OT. This means we can go out this weekend, perhaps for a Mother's Day meal? Or at least down to the beach. Hurrah! She also recommended ditching the zimmer frame and returning to the wheely trolley walker I got last year.

My ride awaits!

So all in all, (literally) small but positive steps forward.

Home Adjustments

Goodness, it's been a whirlwind since I got home on Thursday.  On Friday, we had loads of bits and pieces delivered, including the specialist riser chair which has been a godsend! The carers have been coming as planned and everything with them has been going smoothly, so again, that's fantastic.

Saturday and Sunday were spent sorting things out - or, more specifically, my husband doing so and me making lists.  I also got a hair wash; thanks for the inflatable basin (you know who you are) which worked a treat - clean hair makes a huge difference to how I feel!  I have been overwhelmed by the love and support all my friends and family have given me and, quite frankly, I don't think we'd have managed without it.

Today, I had a visit from the wheelchair service which feels a bit mad. However, it will give me an element of independence that I don't have at the moment - plus will enable me to get out and about to an extent - so it's necessary.  I wasn't very good at driving it though...  Guess it will take some practice!

We are trying to rest as much as we can as well, but with all the things that have been delivered and need sorting, it's difficult.  However, I very much hope things will start calming down now that most things are here, care and medical arrangements are in place and appointments are booked.  I now need to focus on regaining my muscle strength and getting more mobile.

Home Sweet Home

Just a quick update to say that everything went smoothly (ish) yesterday and I am home.

I am so thankful for everything.  The hospice was amazing but I am so happy to be finally back home.