Day to Day Dealing with Disability, Disease and any other nasty things starting with D.

Jill said something today as we "strolled" along the sea front at First Tower. She said "all those people looking at me and thinking "I'm glad it's not me"......just like I would be thinking if I was in their shoes". There's no doubt that having to deal with disability has opened my eyes to how some of us must struggle. The very simplest of things, like walking (sorry, make that fast shuffling) that 75 yards with the breeze in your face, or sitting having a simple lunch looking out over St. Aubin's Bay, are some things we all take completely for granted....indeed, just getting out of the house and going for a drive can become a BIG event. Anyway....toilets....another subject that becomes important, especially if you "need to go". There aren't many disabled toilets....but at least one can get on the internet and look up where they are. It's the height of the seat that's the issue for some....if you can't bend your legs then getting up from a low seat can be pretty difficult, if not impossible if you've lost much of your muscle strength....

......and then there's disabled parking spaces. I've always been a little sceptical of disabled parking....all too often I've seen apparently able bodied people almost running away after parking in a disabled space....and I'm always wondering how easily doctors hand out "blue badges" .... and then there's those who use other people's blue badges for their own benefit. This week in the UK there was some data released about the percentage of disabled spaces being used by "non"disabled people.....not good. Anyway....we now look forward to finding a disabled spot everywhere we go. I accept that we could be using the wheelchair, but Jill can walk short distances (with her oxygen of course) and if we can get close enough to where ever we've decided to go to then that's really good. So far we've done okay....and today was one of those. We managed to find a space at the end of lay-by number 4, and we went to the Lookout Cafe for a bite of lunch. I think we can say that we were very impressed....service was cheery and good, food was quick and delicious....outlook was very pleasant....and no green weed on the beach at all...so that was Brucie bonus. I'll leave Jill to comment further in a minute.

We haven't managed to get out on the Reliant Robin yet...mainly because we've spent Monday at Hospice and Tuesday at the Hospital and Doctor....but it's sitting there in the shed ready to go at a moment's notice...maybe tomorrow? Certainly we agreed today that we could "give it a run" down on the flat between town and St. Aubin. Another goal will be to try to get out on the other Beach Ability wheelchairs at St. Brelade's and maybe even Les Brayes....if there are two of us helping then I think we could well try to walk the dogs (and Jill) at the same time....I know that would be something that would really cheer her up....not being able to walk dogs is something she's really missed.

Finally, no music opinions this evening....but I'll try to start a thread next time.

After a long morning in hospital yesterday and the afternoon at the doctors getting more medication and a weigh in (!). I was keen to get outside and do something a little more 'fun'. So a mini shuffle along the front, lunch and a trip to buy some more plants ticked all the boxes... luckily the weather held out too. 

Monday morning I had an appointment at hospice to see the lymph nurse. It was decided that in order to stem the lymph fluid I have a fairly heavy duty leg compression bandage. She very kindly gave me a massage to try and relieve some of the pressure I have in my legs and abdomen first, and then strapped me up, only left leg as its slightly worse than the right, and it would have been too much to do both legs after drainage.

I followed that up with a lovely relaxing Reiki treatment, before my friend LW kindly picked me up  (two hours later), and we stopped off at the zoo on the way for a bit of lunch. Good to have a 'normal' (ish) activity. Although even that amount of time out is tiring, so more resting at home. 

I had contacted the hospital on Monday, I wanted to basically touch base with the consultant, as its been over 10 days since I had the stomach drain, and I was aware that my abdomen is slowly filling up, and didn't want to end up on Friday evening at midnight coming into A and E with a bad stomach, and unable to eat/drink etc. 

They had booked me in for 10:30am, Tuesday,  and I spoke with a lovely new doctor I hadn't met before, he had read all notes, so I didnt have to go through all my 'history', and he said they'd talked about me at the Marsden that morning at the MDT meeting . They said, don't bother with doing bloods! Its just a check up, and if she needs anything doing later in week, they'd have to do it again anyway. 

They organised an ultrasound scan on my tummy for 12 noon and followed it with a chest xray. Needless to say both sets of 'nurses' knew me and greeted me an old friends, with the usual joviality and gentle teasing from both sides...

Humour gets me through tough times, even if it is sometimes a bit 'dark'. 

Again, I was most grateful that they look after me so well, I can't praise the teams enough for their compassion and care, its outstanding.

Time for lunch at the cafe with Steve and Sue (my gofer amongst other things!) and then onto the doctors.  Once again, very tired when arrived back home and missed out on "scooter' time! 

Twice now I have arrived back home this week and found out that "Mrs Mop" has been, beds made, washing done, ironing whisked away, floors washed, toilets cleaned(!!) She does like a gossip but she's cheap and does a good job ... :-) 

Looked at forecast tomorrow and don't think its conducive to much outside time, so that's yet more tidying jobs. I tried to sweep the utility room floor yesterday with a broom and without plugged into oxygen, well I managed three strokes, and you would have though I'd run a marathon! Couldn't bend down anyway to use brush and dustpan, I just don't realise how incapacitated I really am, until I try stuff.

My work surfaces and cutlery draws are VERY tidy however, they get special treatment at 3 am when I cant sleep, and its all one height! Sad or what?! 

Tonight though, will be different , instead of sleeping in the dinning room downstairs on my ripple Techincare bed, I have a 'date' night with my husband in OUR bed. Three months ago we bought a new mattress, and we do like a 'firm' mattress, which was all well and good, before I became poorly, now its rather uncomfortable! However we have purchased a sort of Lilo single mattress that is supposed to alleviate some pressure ( actually AB has bought it, so as its arrived today we thought we'd give it a go... ) 

I'm sure you three readers will hardly be able to contain yourselves until the next blog update to see how it went... "the date' or the "the mattress"??

A few photos from today... and I'll save the fat leg compression look until a later date....

Happy husband well fed after our lunch date....

 Our best "Cheesy" grins!