VERY SHORT MOAN !

I've not written for a few days as I have had stomach pains, of unknown origin.

BUT, I've been well looked after by Doctors and friends who will be coming in over the weekend to make evening meals.

Im slowly getting back to normal. It is a salutary tale.. even a simple illness that you would normally shrug off without MND

... When you have MND it can be really bad.

So rest and good simple food is the recipe for my return to normal.

But we wont go into what is my normal . LOL!!!

HUG ME, I'VE GOT MND.

TITLE...YOU CHOOSE....

I couldn't decide on a title for today's Blog,    so thought  I'd give you my list of possibles. do email me nicola.woodman@virgin.net, , or tweet 1949NW, to give me your thoughts:
Possible titles are:  Or have you a better one!!

1. Laugh or You'd Cry
2. Spirometry
3. Hospital visit
4. Porters I Met Today
5. Waiting, Waiting , Waiting
6. Oh,  To Be Independent
7. Hospital Maintenance ! 
8. Gold Medal for Survival!

Today I had a planned visit to the Spirometry clinic at Hospital. At this clinic you blow into a tube which is linked to a computer. You have to do each test 10/12 times sitting, then laying down. You have to breathe long and slow, and hard and quickly.

This test measures not only lung capacity, but more importantly the strength of the muscles controlling breathing. It is a fact that these muscles will weaken. When they begin to I will have to wear a breathing apparatus...................................... 

So My appointment was at 1:45. 

I left home at 12:45.. (Jessica from next door locking the door for me. ( I can't lock the door at the back of my house .The angle of the lock is strange, and I fall if I attempt to do it myself !))

I left home at 12:45. Traffic lights along the valley meant I got to Halifax at 1:35. I managed to get the last disabled parking space. YEY! I tottered to the speaking post, pressed the button to get help. No answer. Pressed again. No answer. Kind lady in pink fleece asked if I was Ok. I explained that I was trying to contact reception to ask for a porter with wheelchair, to get me to my appointment. She kindly said she would notify them.

I waited 5 mins. Thinking she might not have given the message , I rang from my car. Yes, the message had been given. A porter on his way.

It's now nearly 1:50. Two ladies in uniform come out. Can I walk... no, sorry.,,,,A wheel chair has been ordered, but he person before me has been waiting for 20 mins... I'll have to just sit tight.... They promised to let dept know  that I was on premises, but would be late.. Thankyou.

During my wait, many cars pass.. Are you going? (politely) No sorry.. I'm waiting for a wheel chair. (Car-parking is at a premium)................... I made quite a friendship with one woman in a yellow Metropole.. she passed so many times! Eventually she said she was giving up on trying to find a space and just going home..................  Most of us in the parking situation are polite and understanding of the problem... But one man,, U goin! ... (really quite aggressive tone).. No, sorry , I'm waiting for a wheel chair. Then because I simply couldn't resist... I cant walk  .    Perhaps I misjudge him, perhaps he was about to have major lifesaving surgery and needed to park quickly........................Perhaps........................ Oh aren't I wicked!!! 

2:05. A polite porter, in a beautifully ironed shirt,  arrived, no wheel chair.( I mention the shirt because my experiences have been to date, that porters rarely look ironed, and or tidy... sorry,  but they are often grumpy too!)..

Need a  wheel chair?    OH ! Two minutes , I'll get one. At 2:20 I arrive at the correct department.

There I huff and puff. The room is small and has air con. The air seems dusty.. Remember there is a peg on your nose, so air in through the mouth causes you to get very dry. Kind lady technician, Viv, gets me water.

3:30 and the assessment is over. I am to meet my friend Val in the coffee bar at 3:40. So Porter called, and I was assured that it wouldn't be long. But I did think that I would have time to go to the toilet.

So I get out of chair, and walk in my ungainly fashion, 7 steps to the disabled loo............. All well. I finished, let down the side bar  to help me stand..... and it wobbles. I try again... it wobbles... I try again, again, again.... .................Well I've been stuck on many toilets, but never imagined this would happen in a disabled toilet in a hospital! But it did. It had!!

No option, I pull the orange cord. A woman shouts through. Are you OK?    No........ Is the door locked? ...........Yes.............. So the special key is  found quickly.  Door opened... it opens directly on to the waiting area... so potentially all   could see me sitting on the throne!! . Door closed quickly though, and the helpful woman, supported me up!!

I'm way beyond feeling embarrassed about things like this. I feel it says more about hospital maintenance than about me!!

Please note all medical staff, and support people behaved impeccably, and did all they could to help me with understanding and kindness.

Porter arrives.( Shirt OK, but grumpy).  I ask to be left at the coffee bar, by reception, as my friend would take me to my car. I asked to be left at the counter. He did................ a meter away,........... then put the brake on the chair( health and safety????)............... Stranded!.............. Kind man,  seeing the predicament pushed me into place. Coffee ordered and sandwich, (you cant eat before the test and I was starving). Woman behind counter says she'll bring over snack. Thankyou says I... But I'm now stranded at the counter. Kind man still behind me, but hasn't noticed my predicament. I turn to him, and politely ask if he will push me to a table. It was then that I found that he was deaf. (what else would he be!, NB Not a comment on deafness, which must be awful, but rather that of all the peoplein the world I choose him!!!). .... but his wife heard, and signed for him to help. Which he kindly did.

Val arrived. We sat and had a natter. FOR AN HOUR, I'M NORMAL!

Home at 5:55. Five mins early, I have a GnT.... may have another after this. Then bed I guess. I'm sooooooooo shattered. Think I've won a gold medal for survival!!

I cant wait to be more in charge of my own destiny, a wheel chair in my car will so help... its on it's way!!!!

HUG ME, I'VE GOT MND

A DAY IN MY LIFE

I HAVE SAID TO PEOPLE , ALL I WANT IS TO BE "NORMAL"

But what is normal, and what is my normal?

noun

• the condition of being normal; the state of being usual, typical, or expected:

  adjective

  • 1conforming to a standard; usual, typical, or expected:

    
    
    
    
    So here is a day in my " normal" life.

    
    

    
    

    Wake... have aches on hips as I don't/can't naturally turn in my sleep.

    
    

    Feet out... backs of legs stiff. Put on foot-up on left foot as it drags and I may well trip without it... but I need the loo...  Might be a thought to go backwards and do a  Michael Jackson "Moon walk" !

    
    

    Get to the bathroom. Sit on toilet which now has extension to get it at an appropriate height, with bars to help me off....

    
    

    Then a big  decision, do I go downstairs or do I wash my face, clean teeth and go down. My pride makes me do the latter... but my legs are so weak, I have to lean into the basin to allow myself to balance.

    
    

    Stair-lift down... takes ages!!! but couldn't manage without it.
    
    
    Into wheel chair.
    
    
    So, Meggie needs feeding. I have to use special hand-helper to pick up her bowls. Fill tuna in one. The dried food spills as I try to fill from the height of the w.chair... mess on floor, can do sod all!   Water next, a big prob, fill ok without too much stretch but it always spills! She hates getting her paws wet..... poor Meggie, so much for her to adapt to. She copes even though she is 15... So loyal and loving........... 
    
    
    So my breakfast.. well it starts with a coffee and a cigarette.. not good , but what the hell!!! ..... Lifting the  kettle is shattering...... but I stagger and manage....  Sometimes I'm really hungry and would like beans on toast or an egg...... but I never have the energy, yes, never!! to make such a feast!!!   so its cereal... easy! But not what I feel I need!
    
    
    Then a decision... do I have a planned visitor , like today,or shower... both exhausting... .  but visit a good thing... so I'm still in pj's probably, but usually decide it's better to interact than to be showered and alone.
    
    
    ( You see, showering is a problem.It takes 40 mins to get undressed an in. Then you soap yourself, which means, if you don't get all the soap off you are slithery getting off the bath seat............. Anyway, assume I'm off seat, Ok. I have to get on cotton robe......... easier than using towel. BUT I cant get bath mats off floor without a risk of fall...... if I lean over I am so unbalanced that I fall.... so bath mats stay on floor in an untidy heap.......... not good if you are trying to sell your home.)
    
    
    So, after this effort, I may have washing to take in or out of machine. Lifting and moving is difficult. I need to have a third place to support me.......... 
    OR it may be that I have to put stuff in dishwasher, or take out........ the angle of the w chair to dishwasher door is hard to manage....... either exercise takes ages....... probably 30 mins at least........
    
    
    Lunch-time is easy as possible, and though I may be hungry at 1 ,it could be 2 before I actually manage to get a snack or even 3 a snack with protein, ie as opposed to toast. I feel need proper protein but find it difficult to do meals with enough. M&S ready meals are good. (No other supplier does meals without yeast extract, which I may not have.... )  But how do I get to M&S?  Yes, I can now drive there, but my legs are too weak to get inside door. So I depend on others. Eliza has brought a few meals and so has Andy, they will keep me going............. but it's hard..............
    
    
    So it's afternoon. I've got thus far in my day...... but I haven't mentioned the calls and emails  I have to make to try to get my life on-line............ the car, the wheelchair, both outstanding issues. Also mail and email re sale of house and equity release of house, choices in new home, care assessments.... ( sod all  finance, ............eventually....... I will be paying for it all!  Well , until I need feeding, then it will be an NHS prob and free , YEY!!......   SHIT!!!)    ........ also....   chats with friends ......... and all the time trying to present as a positive woman......... Not acting, but because, for the most part, I really am coping and , indeed am positive.
    
    
    BUT  It's bloody hard.
    
    
    
    
    
    
    
    
    So now , we're at tea time..... have I defrosted anything to eat??  Usually  yes........ great............Then, at 6, no earlier ,I allow myself a first drink, could have liked a G&T earlier but don't brake this rule. 
    On two occasions this last week friends have been going to come round.............. I have had to cancel,........ not because I don't want the company and help that they offer, but because I'm to bloody tired to cope!  I'm too cold to move. I'm aching all over as no seat is comfortable and I feel such a slug in a chair. So ugly and so useless, and yet I know I have done as much as I can do. 
     MND has exhausted me and filled my day, even though I try to be "normal".
    
    
    I go to bed, eventually. Though tired, exhausted beyond belief, I find it hard to go to bed. When I get there, TV helps.... it lulls me , and I often end up waking about 4 and turning it off, only to turn it on again an hour later. 
    Dearest Meggie sleeps on the bottom of the bed whilst I sleep.As I said earlier, Im generally  in one position and wake aching; or don't get much sleep because the fasciculation on my thighs they are so intense that even the bedclothes jump!   BUT, sadly,  I know that this is a sign of the progression......... it's frightening..............
    
    
    
    
    Such a few things will help my life., as of today...........
    1. The wheel chair in the car
    2. The move to the bungalow
    3. Being able to produce good meals, hopefully in adapted kitchen, but I fear I will need carer to do this as I have so little energy.
    4,. Some sunshine, England, please ,  bring it on!! (To my shame  I'm so jealous of all of my friends popping off on holiday, ...........so wish I didn't feel this way...disgusted that I feel this way!)
    
    
    PS I'm not looking here for sympathy, I hope today's Blog doesn't read in this way. I simply wished to express what a day with MND is like for me. It's 8 mths since diagnosis, but actually 14mths since I started to limp, and that is the date Prof Shaw goes from..... so......... if most people with MND live 2 to 3 yrs........?????
    
    
    Well, who can blame me if I moan on occasion?, If I'm frightened? If I crave energy? If I so want to be able to enjoy freedom whilst I may be able to savour it.......... ???
    
    
    It's hard , really hard ,living with MND and having a positive day, but I do so try........... 
    I really feel that positive thinking will benefit me, in the end........
    
    
    So, Please........
    
    
    
    
    HUG ME, I'VE GOT MND    
    
    
    (To date I have had 8082 views of my Blog.......... I hope that those of you who view here today, will just have a glimpse of how hard it is to live with MND.. thankyou for reading this............)
    
    
    
    
    
    
    
    
    
    
    

    
    

    
    

  
  
  
  

ALAS POOR KENWOOD......

A happy "Normal" day... Only one medical visit!!
Today was th3e day I was to bake a cake as Rebecca , Tom and Iris were coming for tea and cake to celebrate, belatedly, Rebeccas birthday.

All went well but at the very end of the mix, my trusty Kenwood died!!!
I had bought her second hand in 1978, from a friend , Vanessa, who had multiples of eveything and simply didn't want it. If I remember rightly I also bought a denim shirt dress and all for £10!  probably a lot of money then

Anyway I mark the occasion with this pic...

The cake was lovely..

And here it is.....

And this was the company!! a crocodile and a daddy!!

So as you can see I'm feeling brighter... Monday was a very very difficult day, I was very emotional.. This happens some times and I guess you can see that it is then reflected in my Blog... sorry if I was too maudlin!!!

As well as a normal day in the kitchen I kept the house tidy... even made my bed as I got out of it... well you have toi when your house is ion the market!


HUG ME, I'VE GOT MND