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...!

Responses to Feedback on Disabled Access

Further to my earlier blog post, on Saturday (17th May) I sent feedback to the three companies that we couldn't access due to having the wheelchair as well as positive feedback to Pizza Express, which had excellent access.  Of these, Cath Kidston came back to me within 24 hours with a personal holding email and I got an automated reply from Zizzi almost immediately. Didn't get anything from Prezzo until yesterday (21st) but it was a personal one.  The more detailed Cath Kidston one came on the 20th.

The gist of the Cath Kidston response was fairly expected in that the buildings in Chichester are old and often listed, so it's limited in what physical adjustments can be made; they've already enquired about a ramp and it's just not feasible.  However, there's supposed to be a member of staff at the front of the store who can help in these situations by bringing out items that the customer wants to look at, go through brochures and take payment. There's supposed to be a sign to this effect as well. Well, we didn't see one and there was no member of staff - but we may have somehow missed these. At least they've thought about it and have a policy, even though it's a bit disappointing in that, if a wheelchair user (or someone with a buggy etc) wants to browse the store, it's not possible.

The Prezzo one focused on the poor level of customer service provided by the staff - someone should have come to help us. They are going to review their training as well as disabled access to the restaurant.  All good words, so I hope they follow through with this. I've also been offered some vouchers to eat there but if I can't get into the restaurant, I don't see how I will use them! They've given me a number to ring though to book it, so maybe this can be resolved at the time, should we take them up on the offer.

Nothing from Zizzi yet though, apart from the automated response so we shall see about that, hopefully soon! Four working days and counting... not sure how good that is really.  And nothing from Pizza Express; even though it was positive feedback, I was hoping for a 'thank you'!  Ah well.

Disabled Access

We had an interesting day yesterday with accessing - or rather, not accessing - premises in Chichester with the wheelchair. I had a bone scan at the hospital and needed to go in for 15 minutes for an injection, then wait a couple of hours for it to take effect and then go back for the scan. So we thought a spot of lunch in town would be nice as there was no point in going home then turning around almost straight away to return to the hospital.

First up, we tried Zizzi's. Couldn't get in due to a big step up. No signs to say what to do, no staff members paying any attention to help or give advice and husband didn't want to strand me on the pavement alone whilst he went to search for someone. Next up, Prezzo. No step, but massive, heavy doors. Some lovely members of the public tried to help but it was too narrow for the wheelchair to fit through.  Again, no staff came to help despite the kerfuffle, no information to say what we could do and so once again, we gave up.

 

Step to get into Zizzi's is larger than it seems!

Narrow door - possibly it's a listed building but
why not some instructions about how a wheelchair
could get in round the back or something?

Finally, Pizza Express. Lovely wide doors, flat surface to get into the restaurant, spacious layout once inside and a nice, new, tasty menu.  So we went there.

Well done Pizza Express!

I also wanted to pop into Cath Kidston, but there was a step to get into there too so didn't bother. Anyway, I think there are steps inside the shop plus it's pretty cluttered so, even if we had managed to get in, it would have been a faff to browse.

I don't get it. I thought that it was the law that places like shops and restaurants had to make reasonable adjustments for disabled people to access their premises so as not to be disadvantaged due to the disability. Or maybe I have misinterpreted it and not being able to eat or shop somewhere doesn't count as a disadvantage? But it's like these big chains, which I thought should know better and would want as much revenue as possible from all customers (hello capitalism!), just haven't bothered. A sign or some sort of attention button would work surely and wouldn't cost much? I feel lucky in a way, as I hope the wheelchair is temporary for me - but for loads of others, it isn't. I don't think it's good enough. So I have sent feedback to all four places (obviously positive in the case of Pizza Express).  It will be interesting to see any response, I think...

At least accessing our garden for a lovely barbecue is easy so hurrah for that!

Checking In

Just thought I would do a post to say that things are plodding along fine at this end.  I've been off work for almost a month now and have been focusing on building up my strength, mobility and confidence and it's been progressing really well. Going out in the car or wheelchair isn't really a big deal any more; my husband and I have got the knack of manoeuvring me about so it's more and more straightforward each time. It would be great if I didn't have to sit in the wheelchair to get about and could rely on my lovely trolley walker, but I don't think that will happen for a little while. In the meantime, I am just enjoying my new-found freedom, even if it does mean I have to sit and be pushed!

It's quite amazing to experience the world from this viewpoint and see just how much things aren't thought about for physically disabled people - things like dropped kerbs being wonky or broken, shops' A-boards in the way on the street and even people who just don't seem to see the wheelchair and act surprised when they nearly crash into it! But on the flip side, there's plenty of ways that things have been thought out properly and we're really appreciating those; I liked this trolley thing at Sainsbury's that clicked on to the wheelchair and we could shop quite easily with it (apart from avoiding the aforementioned oblivious people).

Another brilliant development was that, at the weekend, we discovered I am able to get in and out of bed with my husband's help, and sleep in my back brace. It's not the most comfortable of arrangements, but it does mean that I don't have to have four carers put me to bed at 9.30 pm every single night and wake me at 7.00 am every single morning. What it also means is that, when I have fab friends over for say, oooo Eurovision, I can cancel the carers and stay up late! So we are trying again this weekend and if it is still easy, I may just do it every Saturday night.  Hurrah for being able to manage my own time and stay up on a Saturday!

At least it wasn't nil points for the UK!

The only fly in the ointment is that I am so tired all the time. I assume this is a combination of my body trying to work to get me functioning again but also it's hard to sleep. No specific reason, just general discomfort and me thinking I guess. But it's annoying when I just randomly drop off in the day, especially in public! Need to sort that really, especially if I start to drool....  eek!

A Lady who Lunches

Having been shown how to get in and out of the car the other day, I must confess that so far, we hadn't put that knowledge to the test. Not really sure why. We're tired but there is also an element of worry, that wherever we go won't be accessible for the wheelchair - either in terms of access or that it will be too crowded and we will crash into people.  

However, we figured that today was the day that we would just do it. We phoned the restaurant in advance to book a table and said that I was in a wheelchair - it wasn't a problem (as it shouldn't be, of course).  Totally forgot that the carers were coming at lunchtime so that was a happy surprise, as they were able to help get me in the car too! It was a lot easier than I expected so hurrah for that. The journey was fine too, although it was only about 10 minutes.

Interestingly, it was a little tricky to get into the restaurant itself. The dropped kerbs were badly maintained and bumpy making them hard to get over, and there was a massive sign in the way that we had to maneouver around. I am tempted to send a complaint feedback... But once we were in, it was fine!

Our lunch venue - yum!

The meal was delicious, the girls were beautifully behaved and we had a wonderful time. It's so good to know that we can do it as a family and I look forward to many such outings in the near future! 

Mother's Day

We had a fantastic Mother's Day yesterday. I was very spoilt with chocolates, flowers and homemade cards from the girls.

My mum then came over and we had a lovely roast at the table, courtesy of the wheelchair and my husband being able to sort things. It's the first time in months that we have been able to sit down as a family around the table, so it was such a great feeling to be able to do that. We also did it ourselves - without the carers - so it's likely that I'll be able to get up with less help, more and more often.  Hurrah! It was certainly one of my best days yet and I'm feeling so positive.

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.