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