RECENTLY... THOUGHTS AND HAPPENINGS.

Today I should have gone to Hx Hospital to see a Bowel consultant , (any detail would be too much information !). The appointment was to be at 2:00. Ambulance turns up.... and we find that not sufficient straps are on-board ! Great apologies , but the fact is I missed my appointment. I will have to get psyched up again !! Rats!!

NIV Update: Night one went well. YEA!!! Nights two and three went well with NIV but sleep utterly wrecked by pains in my legs  . The consequences of this were twofold: acute disappointment and extreme exhaustion. In fact after ambulance debacle I slept for 3 hrs in wheelchair.

WHEELCHAIR Update. I mentioned accident in new wheelchair , it happened last Friday. I expected an engineer on Tuesday but got a phone call to say man was on hols.... I cant wait for next week and his return ! I now realise how comfy the new chair is and how useful the riser.

EXHIBITION I went to Chris Nicol's exhibition last Friday. It was great. Lots of sensitive paintings and lots of friends to meet up with. BUT Boy , did I miss my Luca chair. I am so low down in this one and the riser on the Luca would have been wonderful to chat to people.

LEFT HAND  My left hand, weak for ages . now is causing me trouble with typing and indeed holding wine !!  Both disastrous.

So a little round up on what has been happening in my life..........

HUG ME , I'VE GOT MND

FOUR AND A HALF HOURS

Today I spent one and a half hour working with my physio and OT, trying different methods of getting off the floor. The was exhausting.


So exhausting, that I then spent another three hours in bed getting over the exhaustion!


That's another 4 1/2 hrs of my life gone.... what a waste!
 But a necessary skill as I have ended up on the floor several times recently and had to call for help.


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............)
    
    
    
    
    
    
    
    
    
    
    

    
    

    
    

  
  
  
  

BLOGGING

Sorry if that should be one G... never was a confident speller!

I know I haven't Blogged for a few days.. It's really strange that the last few days, though eventful in some ways, have been relaxing days... It seems the more you have to do, the more you do. But as you must understand, I must rest as much as possible. I think I slept 11 hours a night for the last few nights... well with the excception of last night.
What a night thast was .. wind.. rain.. floods! So, so noisy.. I don't think I slept till it started to get light, then woke every hour... not good... today I ache all over. BUT I am so thankful that my home wasn't flooded , as so many were in Tod.
I was at the Todmorden Hippodrome watching a perfomance of Two, when the flood warning siren went off. The audience were evaccuated and members arrived in force to start to try to control the flood in the building. Such a shame, the building was hit by floods before and the excess on the insurance policy is now very high.
I wish I had become more involved in this lovely little theatre whilst I was well enough to be very active.. I had always meant to, but didn't get round to it until the last few years... now I cna't get on the stage ( because of steps) even if there was a part for a woman with a zimmer!!
So I guesss the moral here, my friends, is don't put things off..... it might be too late.

My days seem so full at the moment, even though I have little more imput  to do with accesss for bungalow... think this is mostly sorted now... just the work to be done!
My big decision is which sofa do I buy.. The one I want is from Sofa Direct.. a lovely Pink velour... but it's expensive.. the sale ends on Sunday... Ikea do a pink sofa but can't get swatch to compare fabric.. do I order today and just take a chance... don't know. keep thinking, the sofa workshop one is soooo lovely, but will I need the extra £500 more in the future?  Who can tell. I feel so guilty about spending it when it might go towards something sensible .. like a commode!!!!!!  Oh god what a thought. I thought maybe writing about the choice would clarify my mind.. but it hasn't... watch this space.
Last Thursday janice came to do more sketches of me, she is painting my portrait... so as I had make-up on I thought i might try to take some pics of myself....

HUG ME, I'VE GOT MND.

SHOULDN'T THE WORLD STOP....?

I remember 31 years ago when Eleanor Rose ( my middle daughter) died, I went out to shops and did all sorts of "normal" things. But it was such a strange existence, people didn't know what I had been going through, didn't know how deeply I was grieving. I felt then, I think I should wear a badge saying... my baby died on January 6th. She was 10 days old." In other words I felt the world should stop and take notice. But , of course, it didn't . The grief continued and very gradually I came to terms with the terrible  , terrible,  event of the death of dear baby Eleanor.

I guess I'm writing about that now, as I sometimes feel, Should the World Stop.. but actually life goes on.. and I continue to order each day. Visits from medical people to help me, visits from friends to whom I appear normal,( well as normal as anyone would in a wheelchair, who stumbled and walks with a strange gait.)... Is this how I want it to be?
Some days I simply don't know. The world continues to spin, but I feel out of sink.

Today I had a visit from friends from Hertfordshire, we first met on a camp site 26 yrs ago. We have kept in touch each year at Christmas and in the last few years met twice.
As they left I was brave. But part of me thinks , will I see them again? But  I probably will. The progress at the moment of the MND is slowish, but I know it's marching on. I will see them, but how will I be then? I simply don't know.
Each parting, especially when I see my children, leaves me with an emptiness, what will I be like next time?

I do try to be brave, as much to protect others as myself. But it is hard. Should I behave like this, or just let my feelings go.
I want to tell people that I love them, care for them and that I will miss the futures we may have shared in some way...

In a book I am reading, Tuesdays with Morrie, a guy with ALS goes to a friends funeral. He hears all the wonderful happy, loving things said about his friend.. comes home and thinks... what a waste... he didn't hear that.
It's no use saying kind loving words about a person when they're gone.. say them now.
Kind loving words may make me cry, but it will so help.

I think I knew this deep down, when I first entitled my Blog HUG ME...  When you are dying you need the love now. The world for me isn't going to stop, I shall continue to be as me, as possible. I shall go out as much as possible, but exhaustion does limit this. I shall paint, and I will try to be as "normal" as possible... but I carry this awful burden.  Some people take the stance (perhaps to protect themselves?) ,..... oh anything could happen... you could be here for years.
I won't. But I want/need  the years that I am here to be good ones.

On Saturday I went, yet again, to look for carpet. It broke my heart to know that a wheelchair on a wool carpet will wear through and thus I must have a polypropeline one. I love wool. It's warm, it's comforting, and I feel  it says something about me as it's natural and so special. What a silly thing to get upset about you may think. But I have had to make so many compromises.. my house now on the market, unable to get out without help, unable to get to the door quickly, not standing facing the shower, wearing a device to keep my foot from flopping, half filling the kettle so that I can lift it, ready meals   etc  ... and this is only the start. I am adapting to my life and my spirit is strong, but I need to tell you all ... this is hard... it's so so hard.


HUG ME, I'VE GOT MND

101

Yes! this is Blog post number 101.... I wonder how many I'll get to?


Sometimes, like tonight , I feel I'm so tired that I won't Blog... but actually it's a good way to end the day, write down my happenings, my highs and lows.... so I like doing it....and many of you are reading it, thankyou.


The Photoshop saga! After hours of fiddling, I finally gave up and decided to get the Printbureau , to sort it out. Cost at that time was no object, I was so furious with myself for forgetting my basic knowledge of the program. So today,( parking outside the door on double yellow lines, with badge(!),) I went to Hebden Bridge. Yes, they will sort it out, as they know my basic format, and all for £7.50 !!!!!   I'm pleased but furious that I spent so much time and energy!! Sometimes you need to just let go... but I am too much of a terrier for my own good.  I just use my precious energy!! I must learn!!!


Today is supposed to be my relaxing day, when I have a treat at Salon Eden. Today it was nails day, now a pretty pinkish/purple. But as well as this treat I had a trip to the dentists for the Hygienist (new dentist, great clean, felt great), also visited Anne to take pics of her wet room to send to Richard, (my landlord) as he is meeting a plumber tomorrow... and as I said , went to Hebden Bridge.
Not much for many people , but too much for me. Shattered again... sorry must stop moaning!   OK ,one last moan, I have back ache as my chairs are not really right, so on Friday I meet Scott to try out chairs. Hope there is one in a nice fabric and colour !!


Tomorrow Jo, from The House of Colour, is visiting, bringing some new make=up to try. Really feel brighter when I make the effort to put on make-up...... (whatever helps), Yes!!! Also tomorrow the technician will fit my telephone link, so I will have a link to my neighbours, should I fall. When I move it will have to be linked to Halifax, as I won't know near people who would take on this responsibility.


So that's been my day.. Hope yours was good.
And thinking of moving:

Enjoy!


HUG ME, I'VE GOT MND

SLEEP,EAT, EAT, SLEEP,EAT/SLEEP..

Sleep... Not enough last night. this illness means I need a good nights sleep and even then, am still slow each morning. Today I had to be in Hx for 10, which means leaving just after 9... this exhausted me..


Eat. My dear dear Meggie has been on a bit of a hunger strike since I moved her feeding tray, with bowls to the kitchen... the reason I moved her bowls was to save the new carpet getting her muddy foot prints on it... but what the heck! after a few weeks of her eating minimally, I moved her food back to the dining-room/studio... she has grazed all day. Well I guess she felt she should eat in the dining room , like everyone else!! What spirit though, cats... especially Meggie .. are amazing. So rest assured , dear readers, my cat is happy and full of tuna fish!


Eat.. I have investigated Wiltshire farm foods,  I need to have a few ready-meals in the freezer for the days when I am too tired to cook. Unfortunately the majority of their meals contain yeast extract, which I must avoid. So, after my voluntary work session, I went to M&S and bought 10 meals for £36! Bargains. I chose special offers and meals that would freeze. M&S foods don't contain yeast extract. So freezer stocked with goodies.


Sleep. After all this I could hardly walk , and unusually had to use my stick in the house. I decided to have a rest in bed. I set the alarm for 1 1/2 hrs later as I had promised to make a few phone calls tonight. When the alarm went off, yes you guessed, I turned it off, rolled over and went to back to sleep for another 2 hours...! So I'm sorry people that  I said I will talk to, especially Liza... I'll ring tomorrow.


Eat/Sleep. So Then I had an M&S meal and now off for more sleep.


This need for rest is so frustrating. It's part of MND. All your muscles are working at mega capacity, thus you get tired. But my stress is that I want to be able live my life whilst I can, and it's so b... infuriating that I am so continuously exhausted. RATS!!!!


SO:


HUG ME, I'VE GOT MND