Wow a fairly successful family outing!!

Yesterday, wanting to make the most of the nice weather, we decided to go out again as a family.  This time we had settled on somewhere we have been a number of times before, Pulborough Brooks which is an RSPB run place, this is usually a good bet because we know what I can and can’t manage. It’s not too far from us which is a bonus for a couple of reasons, firstly because travel for me is rather painful and secondly since my niece has become taller and Skoda made the back seats of their cars smaller we all struggle to fit in the car (I cannot afford a mobility car and we cannot get a larger family car either). Another huge bonus with Pulborough Brooks is that they have an off-road scooter to hire, which means that I can mainly join in and I can get around without worrying that I can’t manage the terrain. We phoned up on the day so I was a bit worried that this wouldn’t be available as usually we give 24-48 hours notice, but shock of all shocks (for us anyway) was that it was available and we could borrow it!! So we all went off crammed into the car, well those in the back seat are which I always feel guilty about because I can’t cope in the back (and at my size unfortunately it would be even more cramped). We had lunch first which came with a wonderful view and lots of little sparrows…..

The scooter was so good to have and although there weren’t many birds about we had a good time. The only downside for me was I needed my emergency kit (will be posting about this really soon as it’s becoming an essential piece of kit for me). I needed it before we got back but faced with a compost loo or a wait until we were back at the start was for me no contest, I waited  (using a compost loo once in my life on a school trip to the centre for alternative technology was once too many, I like my comfort I just don’t do anything like that!!) mum managed in the toilet like a trooper to help me change etc. It’s an unfortunate but increasingly common need for me. We then managed a sneaky ice cream before going home (shhhh if you don’t tell anyone it won’t have had any calories in it)

So for once a family trip didn’t end with arguments or disappointment. We enjoyed the day and I participated as much as I could (the hides really aren’t negotiable by me in an extra large scooter so someone waited with me outside while my niece went in to see what she could spot) RSPB Pulborough Brooks was a good trip out for us. 

Some photos of the day……

Have you got any go to places that you enjoy as a family??

Mismatches!!!

One more of the many, many downsides of “the unspeakable problem” (incontinence, see other posts for some of the other problems) for me is the many clothes changes I’m going through at the moment!! If I was rich I have to admit that this would be a big up-side because it would be the perfect excuse to have more outfits than are needed by any normal person.  I could spend thousands on lingerie that would fit the awful pads I have to wear, and would be able to buy clothes to my hearts content.  Furthermore I would be able to afford to buy or have a wonderful wardrobe or changing room to house all these clothes. But unfortunately, for me, that is not an option. I don’t have enough clothes to accommodate the regular, up to, 4 changes of trousers a day.  My mum is washing clothes as often as she can, sometimes once a day. But that’s not enough, and alas this can lead to quite unfortunate clothes combinations. One of these combinations happened today.  As I wasn’t going out it didn’t matter and as my mum has to go upstairs to get my changes of clothes for me I am not, and would not complain about these combinations. Today’s was quite spectacular, two wonderfully clashing patterns and colours made me rather giggle to myself. What do you think??

I can’t say that I’m the height of fashion at the best of times, I’ve always rather been comfy and had my own style than wear something just because fashion dictates. These delightfully funny clashes however will firmly plant me in the eccentric person category rather than chic en vogue, and the sniggers will be aimed towards me!! However I have to say on this one I will be joining in!!!

Summer days out!!

Firstly I wanted to say that I was totally blown away by your response to my post on “the unspeakable problem”. Far from being unspeakable there was such an outpouring that I was totally in awe of the courage of people out there who, like me are dealing with incontinence everyday/all the time 24/7. People were sharing both with me and each other, I was so humbled by it all. I hope to continue to keep this conversation going by keep sharing with you all my appointments and experiences. I hope that possibly you might like to join me on my journey and if you would, that you might perhaps follow this blog for me. There is no pressure but by following you will get updates so can keep up with the trials and tribulations I will undoubtedly have when I go through whatever treatment I get offered. 

So to today’s blog post, which due to me deciding it was a good idea to do in the middle of the night I have already lost half of!!! Tiredness and phones don’t mix so I deleted a large part of it and couldn’t retrieve it. Moral of the story?? Wait until you’re awake before editing your blog!!!

So anyways we as a family don’t have the best track record with family days out. Whether it’s the weather, arguments, stress and planning something usually happens. Yesterday we decided to go to a pick your own place which isn’t too far away, and yes you guessed it out trip didn’t quite pan out the way we’d planned it!!! Being in a wheelchair usually means that we have to plan very carefully, every detail, we can’t really be spontaneous  (which in my case is a good thing anyway as I cannot cope with last minute plans or changes etc).  We have my 8 year old niece staying with us for 3 days and 2 nights while my sister is at a friend’s wedding. My niece is a fruit fiend, having once had a tantrum in Waitrose not for the usual sweets but instead for an apple, and she’s also an outdoor soul. Great combination we thought for this trip where we could pick some fruit and then have some lunch finishing the day off at the garden centre which is just up the road from the PYO. Hitch no.1 came when we realised 2 days ago that dad had a hospital appointment booked at 11.15am so our morning plan had to change so he could attend. We then decided to go after his appointment, have lunch first then pick the fruit; then afterwards if there was still time we’d go to the garden centre!!! After a fairly successful lunch the family all went off picking and I settled in the sun, with a coffee, to read……

This is the life!!!

But 30 minutes passed when back came the family, with no fruit or veg. The crops were bare!!! No ripe plums or raspberries and so my plan of making jam with our bounty were scuppered and no raspberries for the freezer either. 

So what do you do when you can’t get fruit?? Garden centre for cakes!!!! Lol, ok not healthy but instead of health we went for………..

YUMMY

Hopefully our next trip out will be more successful!!!

The unspeakable problem!!

I know it’s not something that most people talk about and there is a reason for that but today I want to talk incontinence. It’s not talked about because it is embarrassing, it’s not interesting and it’s not something that you want most people to know about.  It’s not something that you can just chat about with friends but when, like me, you have it you can’t just forget about it. So I’ve decided to be open with some of my struggles with it in the hope that at least one other person reads it and realises that they aren’t alone. I’ve got separate diagnoses for this, I’ve got mixed urinary incontinence functional incontinence and nocturia. What does that mean?? To be honest not 100% sure and to me it doesn’t matter. What does matter is that I don’t get the normal urge to go to the toilet, my body doesn’t tell me that I just need to go to the loo instead it waits and only tells me when I’m absolutely bursting to go and this means that by the time I get to the toilet I’ve already started to go. As discussed before I have a big problem with staying asleep, but if I did stay asleep I’d be waking up needing to go and the same problem then happens in that I can’t get there in time. I have seen urologists, specialist physiotherapists and had tablets, exercises and even stimulation none of which has worked. I now have an incontinence nurse who prescribes pads. 

The biggest problem with pads is none are fit for my needs, well none that we’ve found. I either leak meaning I’m having to change clothes 3 or 4 times a day, or they’re uncomfortable or both. The new ones I’ve had from the nurse didn’t stick, and my niece wondered what was in my trousers. I think that the bigger pads are designed for older bed bound people not people like me. Sensory wise I hate having to wear pads and with having to change all the time so my GP and I agreed that something more long term is needed and so we’re looking into the possibility of full time catheters. It’s testament to the fact that I am at the end of my tether with this because I hate hospitals and the thought of another op fills me with dread, but I can simply not go on like I am. So it’s another waiting game, seeing if and who will consider me and then which sort of catheter I might be able to have. Who knows. But for this and future posts about this the unspeakable problem is becoming speakable, I’m not saying it’s not embarrassing but it shouldn’t be hidden away. We can’t help it, it’s our bodies having some sort of problem. Mine is my wonky body not working correctly again. 

So it’s onto the next stage for me, urology for possible catheters. More questions for now to then hopefully sort out my unspeakable problem!!! 

Eurgh look at the range, not the height of comfort or fashion in any way shape or form!!! (And these aren’t the worst!!) Pads are for illustration only and aren’t nearly as bad as my actual pads!!!

Blood test deja vous!!

Yet again two days ago saw me off to the hospital with mum for yet more blood tests!! We have researched and found out the quieter times because of my sensory problems and problems with crowds so late morning saw mum and me at the local hospital for my blood tests. Seems however that most of Horsham had had the same idea and we arrived and took our number  (Yes like a meat counter or other place you take a number and sit and wait to be called) I took number 76, but when we arrived they had just called 39. No seats in the waiting room or entrance to the room and my fear of crowds saw us waiting down the corridor on my scooter so mum was left standing. As discussed before our local surgery has stopped doing blood tests so this is our only option so we had to wait, because you cannot guarantee that if you come back at another time you’ll have any more luck. I’d forgotten my fiddle toy, as I’m preparing a going out kit bag and I’d been thinking of putting it in that. Because of that I’d forgotten to put one in my main bag. That was unfortunate because the sea of people and the lights and wait, plus the fact that the corridor has the toilets in it meant that I desperately needed something to calm me down!! Our wait of over an hour was rather difficult for me, this was our view……

Now I was glad that I was in the corridor but not sure how I would have got past the lady in the wheelchair even if I had wanted to be in there!!! So after over an hour we were finally called, by this time there was only 2 phlebotomists on duty and my stretchy crappy veins decided not to play ball!! Thankfully not as bad as my worst attempts, but I needed both phlebotomists, 20 minutes, 2 rooms, 3 changes of needles and thank goodness only 2 sticks and a vein massage to get 3 phials of blood!!! They better not need any more soon because I don’t think either mum or I could cope, and I can imagine the phlebotomists drawing straws to see who was unlucky enough to get me!!!

Arm 1

Arm 2…

But let’s see what these ones show shall we!! At the moment it really could be anything!!

It took a while to get over these my POTS and fatigue have been high since. I also have a nice bruise to remember the day!!