WHY NOT EVERY DAY ?

As you are now reading this, you will see I have made three contributions today... I must be in writing mode, you may think... but no,  thats not it...

I simply cant write every day because very often I am far too tired. I have mentioned the compete exhaustion you feel with MND,................
.................. and actually, it's often  likely that I'm feeling low. I write sometimes about the difficulties I face, but how boring would this be if it was only one long long rant.
...................And true to say I actually don't want to rant all the time. and I don't rant all the time either.
 I  feel/ hope, I'm quite accepting and am living with  this illness. It is my thought/ belief, that to rant, to lack positivity, to moan endlessly, would do me or others around me no good at all!

BUT  I do admit that I do use the word beginning with S... . quite often!  For example when I drop something,( its so hard to pick things off the floor without falling,),  when I spill the water I'm carrying to change Meggies bowl, etc...... there's a link here, isn't there? Its about dropping things and not being flexible... so I'll use another of my favourite expletives,  RATS!!! But that's how it is...

HUG ME ,I'VE GOT MND

IN A WHEELCHAIR

Saturday was a busy and somewhat challenging day. I planned to drive my green van to my friends home. When it came time to leave Thorn Place, I realised that I had no-one to see me down the steps! Whilst I can get myself down the steps by myself ,it would take tremendous courage, but I would be prepared to do it... BUT I can't lock the door myself. The angle and height of the lock mean that it is totally impossible for me to do this. I rang neighbours , but no-one was answering. I then thought of shouting to the  children playing in the street, when I saw a friend going down the road... I shouted to her. She,Esther, came an helped and thus I could get away only a bit later than expected.
So I drove to Pecket Well, collected Elsa and we went off to PCX to collect my new computer... I'm writing on it now!! We drove via the bungalow to see if anything was happening... no changes viewable from the outside.(BUT I gather plenty going on inside). On through Midgley, down narrow roads, I was preying that I didn't meet up with any other cars and have to reverse! None met!!
After PCX we had to turn round so chose to go through Dean Clough, where we saw the new Totally Locally cafe/shop. We ventured in. Actually it didn't officially open till yesterday ,but we had a great cup of coffee and a good chat with the people working there. I looks like a wonderful place to have a snack. There is a disabled toilet but the chairs have no arms, so you might need to stay in your wheelchair if you visit... OR get two lovely men to lift you up, as happened to me!!!! YEY!!!!
Anyway that wasn't the reference that I wished to make to the wheelchair title.. It was  this....
We went on to a gathering at The Works in Sowerby Bridge, I was wheeled in. And that's it, I was wheeled in! I couldn't choose where I sat, therefore couldn't choose with whom I talked. The problem  arose, not because of any lack of kindness, but space also. It just shows how vulnerable you are/ can feel when you are not under your own power.
I simply can't wait to have my own powered chair. I will then be independent , and providing there is sufficient space will be able to move around, interact and be "normal", just like you all might do.


HUG ME,I'VE GOT MND

TWO SPECIAL PIECES OF MUSIC, HEARD ON SUNDAY

On Sundays I love to listen to radio four.First The Archers, then Desert Islands Discs and finally The Food Program.
Last Sunday was no different except that there was also the prospect of the Wimbledon Tennis final on TV too.
Each week after desert Island, I have a go at thinking about which eight discs I would take. Imagine my thrill when two of my all time favourites were played. Firstly Martina Navratilova chose Ma Vlast, Smetana then at the end of the Tennis Let it Be, Beatles.

Id like to share these pieces with you now.

HUG ME , I'VE GOT MND

TIME PASSES....

Today I wept.
Yesterday I rang re wheelchair possible arrival date....the lady said she would seek info and let me know. Well she didn't! So at non today I rang again... Apparently chair is now at Clarksons where they go to prior to getting to Halifax. I cried with jot/ relief of stress.."
You see having the chair in the drivers seat of my car means I can get out and about. Ok, whilst I'm still in this house it still means a kind neighbour,usually Steven, has to take car from front to back to allow me to get in, (remember I can only go down steps not up!), and with the wheel chair in place he too will have to drive from chair..... But no matter all this is possible, I'm sure.
But in order to actually get the chair you have to have an official handover. I have already done the assessment, (mid May), and I have an indoor chair, so know about charing it up etc... What can be so different?
Sooooo the person who books the handover works afternoons. So at 2:00 I rang. Yes, we've sorted it..your appointment is July 25 ! July 25 th! I can't believe it. I wept. I rang Michaela, who rang wheelchairs, no joy. And I'm on the priority list!!
Once I get the chair there will be nearly another week before the lockdown in the car can be fitted.... I cried again!

My life is passing. Things like this just erode the quality time I have.

I have been doing my very best on all fronts to manage the move, the bungalow adaptations, the car, the wheelchair.. It doesn't seem quite fair.
If I had a partner things would be simpler, just getting a meal exhausting. So sometimes I get a meal then I'm too tired to eat much of it. You know life can be tough.
The other thing I'm waiting on is the care assessment. I do need careers, I don't like to keep asking friends to take me/push me, here there everywhere.. It's not a matter of pride, it's about respecting the lives of dear friends. I'm not their universe!

So here I am feeling sorry for myself. Forgive me. There are others worse off. At least I do have food, shelter and plenty of wine to keep me going till eventually all this is in place.
m

HUG ME, I'VE GOT MND

RESIGNED....NOWAY!!

Tonight I've been watching the NBC tv program on old age. One of the people said ..I'm resigned to being here...referring to being in a residential home. I feel that, at the moment, I'm simply not resigned! I shall fight for my independence all the way! Today I had a rise and recline chair assessment. Mike, the assessor was brilliant and soon(!) I shallhaveachairthat supports me properly. At the moment the chair I have gives so little support that the physio,Michaela, has to come to stretch my back and neck muscles as they ache from suchbadsupport. But the really good it about this assessment is that I will be able to choose the colour." Yey , I think a dark grey willbe great. My carpet is pale grey and sofa bright pink,so it will look really swish! Tonight I had a potential disaster... I was putting a cold tray back into the hot oven. I fell into the oven.thank goodness the tray I was holding was cold as I landed on it and thus was ok! I so look forward to the kitchen in the bungalow which will have low level appliances, so this I will be safe. Oncee again I apologise for spelling and punctuation errors. I'm writing this on my iPad... Tomorrow or sat I collect my new computer so all should be well once again!! HUG ME,I'VE GOT MND

INDEPENDANCE DAY 2012

Wel I had to think of a title other than Wednesday!!

No profound thoughts today. I should have been
N out to lunch with the Cz group, but I simply felt too exhausted to do it.

Tomorrow is busy. Janice is coming to do more sketches. She is painting my portrait. We have lunch together, but Janice is vegan so that presents me with challenges. BUT I do always succeeded!

Also at noon, the rehab team arrive plus people from the chair suppliers, with three chairs! Do they know how many steps they will have to Cary them down/up!

Bethan ,OT, rang and suggested a Zimmer type frame with shelves which may help me with emptying washing machine and putting it on rack. It's v v difficult holding anything heavy as I get so unbalanced... So this may well help.

I also found that the referral to Oveergate hospice has been done. It's interesting that on the news yesterday that death in a hospice is thought to be most caring and respectful. That's what I want, when the time comes...for myself and for my family and friends

Finally.".."...".



HUG ME I'VE GOT MND

CARPE DIEM?

Everyone should carpe DIEM...BUT on some occasions we all find this difficult. For me I've been struggling... I guess it's about this continuous exhaustion really. Real deep exhaustion is a facet of MND. It is deep, so so deep it is unimaginable unless you are there.. And life on your own,struggling with the issues that I am,ie the house sale and move etc...makes you feel low and vulnerable. On Saturday three of the group that I went to Thailand with 18months ago,came to visit, . I had loked forward to seeing Karen,marianne and Claire for so long. They all arrived about lunchtime. It was so funny. We had had one very spectacular night whilst in Thailand,drinking Blue cocktails. SO... I had bought ingredients for blue cocktails and they all brought ingredients too! When they left I realised there was much alcohol left so I do hope they come back soon to complete the drinking!! The plan was that not only did we enjoy blue cocktails but that we went to hebden bridge to see al the street fun connected with the arts festival... We left in dryness, but soon a monsoon arrived , I got soaked,my shoes have taken till today to dry! Sadly I was so shattered by the experience that I simply could not go out to the restaurant. The girls went to hebden and collected Thai food as a takeaway. It was lovely, but I was disappointed that I simply could not carpe DIEM. On Sunday we went to look at the bungalow and then on to the robin hood for lunch. They left about 2:30. Again I was so tired I simply sat in a chair for the rest of the day.... And I had been pushed around, looked after...actually did nothing... So Why,Why,Why do I get so exhausted. Well I know the answer, it's the MND.... But s..t it's hard to cope with, so so hard. Today I have been very weepy, . Bethan,my OT came, I cried. Michaela,my physio came, I cried. My stylus for the iPad broke, I cried.. Oh and my computer packed in too, so I cried! These days don't last too long, well I hope not... Michaela contacted the hospice. I think this is where I wish to die. I know they are kindly to patients but also support family. And no matter that I can do so little for my girls now, I will never stop beingg their mum and thus always wish to care for them. It seems that Oveergate hospice will give them support too. It seems to me that where I die has to be as kindly for Eliza and Christina and their families as it is for me. So this was hard. A referral to a hospice. On Wednesday I am going to the incredible edible meal for the Czech visitors, being held in the Todmorden Unitarian church. BUT I won't just be meeting with friends and enjoying the lunch. I will be carefully looking at the building as this is where I think I will have my funeral. So nothing is quite as it seems for me at the moment. Well never is it as I try to present. I try to be normal and as positive as can be, but underneath there is always this river of thought... I've got MND. I'm terminally I'll. How long do I have left? Why can't life be normal? Why dam I no longer useful? I'm just going to publish this copy. I'm writing on the iPad, and I find it difficult to redraft on.. So forgive spelling,punctuation etc errors. I'm feeling low friends. So please send your hugs to brighten my days. Thank you. HUG ME I'VE GOT MND