HONEST, I HAVEN'T DESERTED YOU !!!

Since I last wrote I have been busy, busy, busy.

I eventually got the date for my catheter op sorted. (After 5 phone calls !!) AND I was right ! My dates were correct, so I am due to have it on Mon next ,( 6 more sleeps !)

I ,perhaps, could have found time to Blog last weekend , but actually I indulged myself in painting. It was bliss! I completed 3 pictures and am well on the way with another which I had started.

Monday was busy with physio, Laura (cleaning), Tesco, Becca doing my nails (deep purple), Dr Solomon talking about  /discussing End of Life Decisions (not easy ,ever) and  Janice, my artist friend, coming for lunch (3:00 by the time we ate !)

I've had two new night sitters recently. Consequently, I am extremely tired, as I never sleep well with a new person.

Today I went to the Hospice and Martin ( whom I know as he was hospital Chaplain when I was a presenter on  Hospital Radio , at Halifax, and from when he did assemblies at my school in Hebden Bridge), and Hal, came in to sing with us. It was great ! I had my nails cut and a foot massage and a quiet snooze in a corner ! The bus that transports me is new and my wheelchair was placed in a virtually empty ambulance right in the middle. I felt every jolt and needed paracetamol for the pain on arrival at Overgate. Tonight I should have had standing practise , but was too tired. I'm writing this then cooking meal. Karen is the night sitter tonight, we get on well and she will help me shower.

Tomorrow I go to Sheffield to see Prof Shaw. Well I hope I will!! Snow, wrong ambulance, no ambulance, mean that this is 4th time lucky !!  This will be a long day.

On Thursday, my college friend, Christine is visiting from Cambridge. YEY !!!!

On Friday Laura comes, then physio,  and Barry will visit for a catch up in the afternoon.

On Saturday, I go to Rugby for the Baptism of my newest grandchild. This will be a mega journey and as I'm hiring the minibus, not without cost. I'm soooo looking forward to seeing people. It will be fun . But it may be sad also, as it may well be the last time I see some of these people. I doubt that they will ever make it up north. BUT Barry and Maria are coming with me, so they will be a great comfort,  I'm sure.

So on Sunday a lie- in was planned,had I been able to arrange people to get me out of bed later than usual. BUT I have to go into hospital in Huddersfield at 2:00. Actually, I don't need to go until 7:00 on Mon morning, but there are no carers to get me up early. My op is on Monday and I will come home on Tues.

So , a busy week. I trust you will forgive me if I don't Blog for a while. OK??

Hope you like the music I am leaving for you.......But most especially for all of us with MND.

HUG ME, I'VE GOT MND.

DISASTER MOVIE AND PIC !

If you read yesterdays Blog you will know how I fell into the base of my bed ( a drop of 8"), and got stuck.
Here are two pics of the bed afterwards.

And for tonight's disaster, I made a movie !
It doesn't look as bad as it was.... but if you are in a wheelchair and hot fat and potatoes drop on your foot.... it's not good !! Fortunately I wasn't hurt , but do have greasy mess on the floor. I now have to avoid the mess as the wheels would perhaps slip if I went in it and if I did go through the mess there would be greasy tracks on the carpets.
So I will ask my night carer to clean it up at 10:00 when she arrives. It's now 7:30 ish !

HUG ME, I'VE GOT MND

O0O0O0H, WHAT A NIGHT ! WHAT A WED.NES.DAY NIGHT !

My carer last night was called Jay. Jay had been with me approximately two months ago.
Since then so much has changed in terms of my needs.

I had thought I would shower but decided to wait until Thurs as Jay did seem very anxious at the thought of using the hoist. I decided a simple regime would be best.

When it was bedtime the fun began !

I had said all my clothes are OK to wear again ,except, my underwear. Underwear goes in the laundry basket which is in the utility room.
So why did she ask about every piece of clothing ? Why couldn't she find the utility room?  After all there is only one room with a washing machine and dishwasher in !!!!

I feared her helping me into bed.
I was right so to do!

I explained that I could move myself a little, but not, if there was anything in my way, like a pillow or blanket. So why did I have to ask three or four times for these items to be put on the floor ??

Anyway ,without going into too much detail, I was in bed with light off at 1:00am. I arranged that she would wake me at 4:15 to turn me.

This is where the fun begins.
I did get turned, indicating, leg by leg and move by move, how I should be turned.. I tried to snuggle down, but knew I was too low in the bed. I also had burning feet. Efforts to move me up the bed  were attempted. (The full version of this lasts about 20mins !!! ).

Jay got a cloth to cool my feet.
I tried to sleep, but found I was too scrunched .
I called to Jay.I now needed to use the bathroom and this would be good because on my return I could be placed "up" the bed, in the correct position.
Now, to get out of bed, the back rest has to go up, ie like if you wished to sit. But my bottom was so far down the bed. It was the middle of my back that was resting in the place where my bottom should be. Jay moved my legs towards the ground . In order to try to help myself to a sitting position ,I held onto the foot of the bed.
And that's when it happened.
As I pulled towards the bed rail, the mattress gave way , dropping me down six to eight inches. I was wedged between the mattress and the end of the bed.

I felt as if I was about to fall through so I pressed against the end of the bed. Now what should happen, dial 999 ? or in fact what did happen... Jay came into her own and pushed me up from the dip as I pushed too.

I sat on the edge of the bed, gasping for breath as a result of the shock.
A toilet stop,and  a few cups of tea laterand  I  relaxed (!!) , in my chair. I was there as the day carers came .
I wrote a report of the event and emailed it to my OT and Physio.

A few hours later three men appeared. They fiddled with the bit of plastic that had popped out. It was a holder for the mattress that actually wasn't needed. But as to the dipping mattress it turns out that the button that lowered the base had been pressed. As feet are light the mattress stayed level , even though it wasn't supported. The result was, that when I went on to the foot area, I fell through onto the base.

I did feel embarrassed that I had caused such a panic, however the whole episode gave me a huge shock
.I was, and still am, very shaky.

And all of this on only three hours sleep.

HUG ME, I'VE GOT MND

BED-TIME AND NIGHT CARERS

When I moved into Misty Morn, I chose to place my bed on the far side of the room so that I could see Stoodley Pike from the window. What I forgot was that I was in a bungalow and the curtains would therefore be drawn when I was in bed !!

A few days passed, and I realised I needed to be able to plug in wheelchair from the bed , in order to charge it. I could not get to plug a meter away. The only place for a wall plug was on the opposite wall, thus my bed moved from one side of the room to the other !

Time has passed, I now need a carer to put me into bed. The carer now puts the chair on charge.

I had a brief (very brief) dalliance with a hospital bed. I found it so soft and so narrow that I felt I was drowning in it. It was so narrow that I couldn't move. I need width to spread my arms and use them to pull myself a little bit .To take that small amount of movement away was both inappropriate and cruel.

the narrow bed was taken away, PDQ!

I went back to my normal bed and a Profiling mattress, (to try to prevent pressure sores) , was placed on top of it. It was then very high and it was only with difficulty that I could get on it, and that was with a hoist.

So yesterday, a new Profiling (hospital) bed was delivered. It is 4' wide and actually doesn't look bad at all. It has a sort of Pine finish, and melds well with my bedroom furniture. It goes up/ down, sits you up, raises your legs, head up feet down, head down, feet up....... all at the touch of a button !!

It is easy to lower sufficiently for the hoist to be used, and thus is very safe.

Each night a carer arrives at 10:00. They help me undress,  sometimes  shower ,  and get ready for bed. They wipe my feet and then massage my feet and legs, to aid circulation. (By night time my feet and legs are  quite swollen and  feel like they are burning. The massage certainly helps). The carer often has more intimate things to do too.

When I am in bed, a night bag has to be attached to the normal catheter bag and positioned on the side I am facing.

After 3hrs 30 mins sleep, the carer has to wake me and turn me over. I don't move myself at all when asleep, and if left to would wake in pain from the pressure which builds up in one place, my thighs in particular. This involves moving my legs and supporting my shoulders to move, also moving the night bag stand from one side to the other, without pulling... a delicate operation.

My temperature seems to fluctuate during the night and I can wake cold , or conversely hot. Each time I have to call on my carer to add blankets or remove. If I move my head the pillows may move and I cant get comfy again until the carer  sorts them out. I need a spray if my mouth gets dry, which it does as I don,t produce sufficient saliva, I may need a drink of water........ the list goes on. The carer may well be in my room every hour or so throughout the night.

The agency that provides these people has just rung. It seems that I might be a little too picky about whom I will have doing my night sits. !!!!!!

I don't feel I'm picky. After all who would want someone who sings with the TV all night, someone who doesn't wash their hands and hands you a glass with their hands right over the top, who says, are you OK? as they waltz out of the room, who telephones friends throughout the night and doesn't answer your calls, who pulls your legs roughly onto the bed, who places the night bag just too far a way that the tube pulls and gives you pain.... and soooooooo much more.

Consequently, they are finding difficulty finding appropriate carers .
I see this, not as my fault, but a fault of their recruitment policy and  majorly a fault of their low pay, barely above minimum wage for antisocial hours work.

But do I accept a lower level of service?
No, I cant !
I won't !!

And why should I?
Why should I?

It's my life, whats left of it, and I should, at a minimum, be able to sleep safely and comfortably.

So tonight , I have a carer from league two, because the league one players are unavailable through other work, family commitments or other valid personal reasons. Simply its the case that they don't employ sufficient carers to cover such eventualities.

And who is it at the end of the line?

Those of us being cared for!

I have my voice to indicate my needs, but what happens when I can't?
I am filled with fear.
So, so , frightened about this aspect of the future. I may have league two people caring for me and be unable to express this sufficiently.
It is a simply terrifying aspect of the future, never mind all the other MND aspects of swallowing and breathing.

PS. For those of you that don't know how MND works, Nikki's Simple Guide:  Motor nerves, (the ones that make muscles work), stop working, but Sensory nerves aren't , thus you have feeling.
So if I was hit on the toe with hammer I couldn't move it out of the way but it certainly would hurt !!

HUG ME , I'VE GOT MND

CHRISTINA ROSE

Today is the 31st  birthday of my daughter Christina Rose.NNNNNNeweeee

As I did with the birthday of my daughters Eleanor and Eliza, I would like to record the events , my thoughts and memories of her birth.
Thus I will be creating a record for them all... my dearest daughters.

Following the death of Eleanor just 16mths earlier, another pregnancy was always going to be filled with some apprehension.

Ray and I had been to talk with a Dr Grant in Cambridge re the statistics and any information re Spina Bifida.She was doing research into chemicals affecting the foetus. At that time it appeared that people working in the hairdressing business had an abnormally higher incidence of babies being born with Spina Bifida than people working elsewhere. There was also a peak of people working with chemicals generally and those living down-wind of chemical factories. We discussed not only our information with her, for her research but she also gave us quick access to a geneticist at Addenbrooks.

We saw the geneticist and he explained the probabilities of having a second child affected. Apparently there s a higher incidence in boys, but they are not as
adversely effected.

(Of course it must be said here that this was the state of the research then, 31yrs on the scene has changed dramatically).

So Ray and I decided that we would have a third child. We wereadvised to follow a new protocol concerning the taking of Folic acid  for 3 mths prior to trying to conceive. (Now this is the absolute norm, but it was cutting edge  at that time.In fact I could only get Folic acid tablets on prescription.)

That year we went to camping in France as always. We had a trailer tent and headed down to the south, Beziers. We overnighted in the Beaune region and had a wonderful meal. (Liza had her usual of, Omelette and Frites!). We drank gallons of the local red wine served chilled. We loved the site, the restaurant and the wine and thus decided to make exactly the same stop on the return journey.

Our stay in Beziers was hot and wonderful. It was the year of the wedding of Diana and Charles. A TV was put up in a large garage-type building on the campsite. I remember three highlights. The crumpled dress, watching through a broken window balanced on rocks, and sunburned shoulders from standing in the same position too long ! (Ray and Liza made sandcastles and swam!)

At the end of the lovely holiday we arrived back at the campsite in Beaune.... and that’s when I knew I was pregnant. One mouthful of the delicious wine and I gagged! One look at my plat crudities, and I left!!! I sat in the car whilst Ray, ate two meals !! And, a bewildered, Liza her Omelette frites!!!!

So at home I had a pregnancy test. Things had moved forward (still no Clear Blue line things ) but at least the Dr would test a sample and it only took 3 days to be returned. But I knew. My need, as with all my pregnancies, for coffee milkshakes,was insatiable !!!

When I had to book in at Mill Rd,Cambridge,  they indicated that I would be with Mr Edwards again as my consultant. I refused explaining that whilst I may have accepted his reasoning not to give me an amniocentesis when I had asked for one with my last pregnancy, (I had always felt things weren’t quite right, the way she moved, lateness of moving etc). I would not be under his care again. I was changed to Mr Milton.

Until I was way-on in the pregnancy, I told no one, but my friends guessed as I soon stopped wearing jeans, (no waist expanders in those days) !

It was decided I would have an amniocentesis for this third pregnancy, and I forget how many weeks I had to be, but I do remember there was a very long wait before the results were ready, probably three.

For the amniocentesis I was taken down lots of long corridors to a small scruffy room. There, there was a massive , ?? Scanning?? Machine. Bizarrely the Dr placed a 5p piece on my bump and it made a visible track, down which he could see to insert the needle, assuring me that it was amazing how quickly the foetus wriggles away !!!!

Ray and I were told together at the anti natal clinic that our baby did not appear to have Spina Bifida, but that they couldn’t be certain about the Hydrocephaly , and , (best of all!!),that she was a girl.

At that point, we told all our friends officially that we were to have another baby , but we kept the gender a secret. My parents were told, of course, that I was pregnant, but they didn’t tell anyone. They felt the birth and death of Eleanor, was a slur on the family and in actual fact didn’t ever see her. They only came to her funeral as I said they ought to.

The name quest began! I didn’t ever want to name my children by any name of a child I had ever taught. My short list was of two: Christina, (after Christina Rosetti), and Gabriella. Ray didn’t like Gabriella but was Ok about Christina. His thought, if I remember rightly, was Jean, Well, whatever it was, I did dismiss it, as it didn’t have enough style for my liking!! So Christina was decided upon and Rose for a middle name. (My middle name, and Eleanor’s too).

So it was by now Christmas Eve. I went by myself to have the scan, to see if our baby had hydrocephaly. The consultant looked and looked. It was the last week I could have a termination. He couldn’t be certain that there was no fluid. (Now a-days a shunt can be put in in-utero, but not then). Eventually he said ,well if you were my wife we would take the risk and go ahead!

I did. 

But what a decision to make on my own.

Easter came and went and Christina was very due. It was Tuesday 14^th and I went to antenatal. The baby’s heart rate was monitored. What a lovely straight line I thought. A straight line, this is not good, the nurses said, echoed by the Dr.  I had to go home, get bag and husband and go straight back in.

I rang Ray at work in Welwyn Garden City. He came home. It was a sunny day and I had my best, blue flowered, Laura Ashley dress on, no coat. Marjorie took it off me, washed, dried and ironed it and I was set fresh to go by the time Ray got home. Liza was with her Auntie Marjorie and very happy.

I well remember the labour. Long as ever ,until a drip was set up. I was determined not to have a catheter and made myself go to the loo every hour on the hour. They said they had never seen such discipline. I was determined never to have another catheter in my life !!! (And look where that has got me, but this is Chrissies story, so enough of my present problems!!).

As deliveries go, I was aided by a new piece of equipment... a foam wedge to go behind my back!! New technology, first time used in Mill Rd!!!  And, loathing gas and air had some Pethidine. Good stuff that!

Baby Christina was finally , and safely, delivered at seven minutes to six, just in time for the news !!!  On Thursday 15^th April 1982.

She was checked sooooo thoroughly by the paediatrician, and the whole hospital staff seemed to know about us, and came to offer their congratulations. From my delighted, hazy, state I welcomed them all, but barely let go of my baby.

When back in a ward and Ray having rung parents etc ( from a call box!), he told me two bits off the news: Arthur Lowe (Captain Mainwaring  had died), the Falklands war was still rumbling on. 

And one bit of very personal news, which shook me. Ray said. I’m not being made redundant but we have to move.... to Middlesbrough. (I had never been further north than Manchester, and that was only for a short interview, which I declined.) I was shocked. I don’t ever think I quite got over that news, leaving the friends that had supported me through the death and grief following, Eleanor. It was a hard blow.

But at 6 weeks (I had made a gown) Christina Rose was baptised, and at 7 weeks we set off north to find somewhere to live.

Times were not easy but I was delighted with baby Chrissie, Little Dizz as she came to be known. I cuddled her endlessly, consequently, she took ages to even bother to crawl, and then it was a bottom shuffle!! And even longer before walking and talking !!

Little Dizz, is lovely to this day and still my baby , even if she is 31 today.
Special hugs to you,  Lovely Christina Rose , Mum XXXXX

Baby Chrissie with doggy.

Baby Chrissie , Liza and Ray

HUG ME I'VE GOT MND

HERE I AM !

Recently a number of people have contacted me, to see how I am. They have been worried, as I haven't Blogged, Face-booked or Tweeted for over a week!

I am somewhat humbled by your concerns, thankyou so very much.

So why haven't I been Blogging ? 

Well I have been unwell , a third UTI in four weeks, and boy does this bring you down!! Had I written, all the content, would have been to do with, yet again , toilets and bottoms !! And this would be far too much information! I've kept quiet and stored up a few gems for when I did start to write again...... and here they are !

Well Margaret Thatcher died. I had missed the news that day, but  was alerted to her death by a,  funny or tasteless (depends on your point of view), joke sent to me. Through this. I realised she must have died , then  looked on the news channel to check.

Because:  This isn't the first time I had thought she had died.
You see,   I was at Glastonbury on the day Michael Jackson died. It was a Thursday if I remember rightly. I had travelled there alone, and was tired after the drive As it was raining, I decided to take refuge in my sleeping bag and have a nap. I was awakened from a deep sleep by lots of chatter going from tent to tent. In my sleepy state, I heard the Margaret Thatcher had died....... but no I had mis-heard ! , it was Michael Jackson........  I thought my hearing was spot on.. Not that day !!!

I am having more carers now. All of the people are kindly and mean well, but sometimes just don't quite get it !

These two stories are to do with Onions!!

First: I was to have a potato and bacon dish for dinner and asked a carer to make a small side salad to go with it. I  would  bake it later. (Well I simply can't attune myself to eating at 5:30 ish each evening. ) So I said that  there were two tomatoes, a shallot and an orange (orange acidulates the onion and makes it taste yummy).
Off I went to the bathroom.
On my return I saw my salad: One tomato( not two), half an orange (why?) , and one whole large onion!! (Don't think she knew what a shallot was !! ) So as not to offend her, I said thankyou, chucked away most of the onion when she left ,and found the second tomato.
Looking back I cant imagine that I kept a straight face when I viewed that whole plate of chopped onion!!

Second: a rather more serious error to do with onions. As I said before , I frequently ask carers to do prep , to enable me to cook my evening meal. (I find chopping very difficult). So I planned to make a tomato sauce with mushrooms to use with pasta. I put out two onions and a few cloves of garlic and asked for these to be chopped.
Meanwhile I went to the bathroom.When  I needed help to get up,  in came the two carers . The person chopping the onions came in with her gloves on. Do change them, I said or, I will end up smelling of onions .
She oblidged.
Then helped me.
Then, back to the kitchen..
And I knew, I just knew....... "Have you changed your gloves? ", I said.
No, was the response.
Please do, said I .
She did, but obviously didn't understand my request.  I took the opportunity to gently explain that bathroom tasks and kitchen tasks are different and changing gloves is like washing your hands after leaving the toilet to do anything else. I beliieve she felt she was protecting herself fine , forgetting that gloves have a two way  purpose!
Later she did query my request ,but was assured that I was correct !

Once again , whilst these tales  may be funny and occasionally worrying, what really concerns me is the time when I may not be able to communicate my needs and comments quickly. 
I have noticed people do rush into tasks, without awaiting full instruction, and perhaps I do make them impatient as sometimes I cough between words or simply take a breath......  I have to trust, that, by the time that comes I will have a team of carers  who know me well and can be reliably trusted to do things correctly.

A step closer to Glastonbury.
This week I did manage to source a Profiling bed , which I can hire for a week and take to Glasto !

On Tuesday ,I am to have Double Profiling bed delivered . These are apparently reserved for bariatric patients . I am being allowed one, as I get so stressed in a single, feeling so enclosed , like being in a tomb. 

I had a need to , yet again, move beds around, getting rid of one of my doubles. But until the person who wants, it can collect, it needed to be moved to the garage to make way for the new bed.
Who to do it?
My friends have done it once.
Then it was moved back in by removal men.
Now there is an urgency to get it out again!
One of the support workers offered that her son would help. He would turn up in an hours time.
He did. Bed moved !!
How kind, I hadn't even met him before.

And another lovely happening today. A surprise visit from a friend, bringing smoked salmon, cheeses and lots of goodies for lunch, and we had a couple of glasses of champagne too !

Not a bad way to end this Blog? I hope you agree. 

HUG ME, I'VE GOT MND 

A GOOD FRIDAY !

Ive had a great, but busy, day.
The carers who came ,both times today, were top notch. It so makes a difference when they are kind and give you time ( or at least pretend to be un-rushed !). So a lovely salad made ready to go with my homemade macaroni cheese with ham. Yum !!
AND . maybe I need to eat more !!! LOL !!! Because, I have been offered a double profiling bed, These were a well kept secret, kept specifically for v large patients !! But because I  didn't cope with the single bed, felt trapped and enclosed , I am allowed to have one. Apparently you may only have one if you sleep on the ground floor. Well, in a bungalow that is a no-brainer ! So I have to decide. But I think I will have it, as eventually I will need it. and also if I am to be put to bed at 10:30, I think I will have a TV on my wall and with this bed will be able to sit up and watch. I said I would think about this until I see the Physio again...............  watch this space.

This wont be a long Blog tonight as my iPhone has arrived !! YEY !! But need to cook meal and paint another range of mountains on my latest work, first !

So I'm signing off, but with the news I'm feeling so much better, its only MND that gets in the way of "Normal" !

 I must admit that during the last weeks  I have felt so so ill , that I did wonder if the fight to continue was worth it. But you don't admit this till the time has passed do you? I mean , people will worry........ but be assured I'm back to normal .

HUG ME , I'VE GOT MND

ANOTHER DAY IN PARADISE !

Another great night last night. Shower and a foot massage before bed. YEY !!!
I was woken at 7:30 by the carers . Very early, but I'm feeling so much better that nothing was going to phase me.
BUT then it came to the transfer using the standing hoist. There have to be two people..... and I'm still  not sure why ,as when in this hoist I am completely safe. Anyway, two carers arrived, one knew a little of what should happen and the other , not a clue ! 
So who instructed them ? Well me of course !!!
Breakfast fine and at 9:40 I left in the Green Van for my appointments with the psychiatrist and then the social worker in Hebden Bridge.
The medical centre has disabled parking but the road was narrowed by bad parking of others. So I decided to back out and look for another space to park. Not easy to find as Thursday is market day in Hebden, It was then as I was reversing slowly, that a car came round the corner and simply put his hand on the horn in annoyance. I wanted to say, walk in my shoes mate, but of course he never will ! So back I go up narrow drive, let him pass and complete the manoeuvre. The parking gods were with me, a perfect space for disabled at the end of a row so I could have space to open the rear exit.
I exited, went to appointments . It seems that as the NHS are paying 60% of my care package I will get no choice in whom is employed ( VERY annoying).
Bright sunshine and still feeling positive, I went to pharmacy to see when much needed catheter supplies are coming .They hadn't been ordered ! Would have to go across the road to the Dr's. No problem but annoyed a little.
However I needed moisturiser, I use No7. This was brill, 3 for 2 ! At £23 a pot quite a saving but with the numerous vouchers I had I ended up getting £10 worth of Boots points. So a purchase of £69 came effectively to £36 ! A killing !! Yey !!
Off to Dr's. 10 bags had been delivered (you need one per night ) , and no repeat !! Anyway the receptionist was very helpful, so all should be well, fingers, or should it be legs crossed !!!
Back to the car. It wouldn't start !!  AGAIN. I tried and tried but the key would not turn far enough. I immediately worried that my right hand had lost strength..... so RAC to be contacted ....... But catheter needed emptying if I might have to wait for them.
Back to Dr's . I go into disabled loo and its helpfully on a plinth. But this means I cant get tap over loo. Off to friendly receptionist again. I explain the problem to her ( and the rest of the waiting room !!! She gave me a small container. It took 3 goes of stopping and starting tap to empty bag!!!
Back to car. Ring RAC, thankfully phone number on the sticker inside. BUT they needed the reg number, Back I go out of van and read it to the RAC man. They were helpful and kind as ever. And arrived within 30mins. This gave me enough time to go onto market and buy a samosa, I was hungry. It was lovely !
RAC arrived and the B Green Van started first go ! I had been holding brake down as I turned key and this is very awkward as hands have to cross over in small space, thus my hand was not strong enough. So now I know I had been given mis-information and just have to use key, no break. Easy Peasy.
I got home at 1:40. Shattered !!
Fell asleep in chair, coat still on, Im so cold.
20 mins later..........Phone call. Landlord wanted to come with plumber to fix , not hot enough shower !
Maria popped up. LOVELY ! Had a cupa together and she rubbed my feet warm.
Michaela arrived. I had to go in stand up hoist and try walking. I shuffled !! But the first movement for 2 months!!
Carers arrived as Michaela was about to leave. Made me a salad, got steak out and chips....... so now , when I finish my GnT !! I'm off to cook!

ps . I'm feeling so much brighter, that ,though this was a challenging day, I have survived.......... with only one set of tears, and they were of sheer frustration!!!! 

HUG ME, I'VE GOT MND

MILLION DOLLARS !

OK sorry haven't Blogged for a few days.

AS you know I have been feeling so unwell. BUT I'm now feeling a MILLION DOLLARS! SO much better since Monday night.

What happened then ?. Well the night carer dared to use the standing hoist and I had a shower.

WOW you cant imagine how good that felt. AND I'm having another tonight !! YEY!!

My bed has been raised today, so that hoist can go under, so the stress of getting into bed and on and off the toilet removed.

OK, its an acceptance that my legs are crap, BUT I knew that. Every move was so stressful, you simply cant believe how much the lack of stress has empowered me.

HUG ME, I'VE GOT MND