About trying to live with ms and discovering that suddenly most places are inaccessible and that life as a handicapped person is very different.
Friday, August 07, 2009
Hot and muggy weather.
Luckily it is a tiny bit less hot and muggy today, but only by a fraction as it is still 28 degrees, as it was at gone midnight last night.
Yesterday was really awful, every time Richie had pulled me up the bed and had got me sitting good, then literally within minutes I would have slipped back down the bed and also be sagging too much to the right.
It was difficult for both of us, me because I could not maintain my position for more than a few minutes.
The worse thing was trying to maintain a good sitting position so I could eat, but every time as I ate I could feel myself sliding exorably down the bed.
Made me feel very uncertain and even more handicapped, as well as worried that I was experiencing a further progression of my MS.
On reflection think that it is the heat that is intensifying all my symptoms to an incredible degree.
That is what is causing me to slip and slide in bed; I am just too hot to maintain my sitting position at the moment.
This makes sense especially when I can see a noticeable difference as soon as there is a cool breeze.
Today it is hot and overcast, with a forecast of rain, possibly by the end of the day, and also tomorrow and Sunday.
Feel sorry for friends returning from holiday if the weather is not going to be so good for them getting home.
A drop of rain would be extremely welcome after the muggy heat we have been having, might also be better for plants, fruit and vegetables.
Certainly would be better for me and everyone who can not cope with the heat.
I hate the way this MS makes a heat wave a truly horrible experience, which is strange as I used to love the heat.
Now I really can only cope with the fan right next to me and pointed directly at me, the only time when it is not on, is during the night.
Then if I wake up, I lie here aware that it feels like I am extremely hot and I am lying in very hot liquid.
Not too different to golden syrup, it is an odd feeling lying there like that unable to move an inch.
Just totally unable to do anything, that is when I feel totally handicapped and that is when it hurts the most.
It is also the moment when I have to be very aware and not let myself sink into gloomy, negative thoughts.
Do not want to start crying as it is so difficult to stop crying when you are lying down.
Once you start crying ling down all the tears run straight into the ears which is a horrible feeling and always makes me cry even more.
If I can’t stop crying, I have to activate the bed and press the button on the remote control and lift the bed.
That usually does the trick.
I have always been quick to cry, I cry when I am sad, when I do not feel well but also if I am happy.
I cry if someone else is crying.
When I visited Trinidad I was taken by my cousin to see her mother’s old house which I remembered so well.
It was the house we used to visit regularly every week; we went for lunch and often stayed overnight.
I burst into tears when I saw the house again.
That evening my cousin Aileen was telling her husband Philip where she had taken me that day and she told him that I had cried when I saw Auntie Jo’s old house.
Well, when Philip heard I had cried when I looked over the gate at the old house, he started to cry too.
Later on I was shown the video of one of their 5 son’s weddings, 6 months before, it was an incredibly moving video with all the family crying as they watched the wedding ceremony.
This made me cry and then one by one everyone in the room was crying and when Philip came to see what was happening he joined in too and we were all crying.
My cousin Aileen was the only one not crying, she was handing around the box of tissues saying like she did that day at her mother’s old house ‘’ glad to see you enjoying yourself ’’
At this point I realised that it was nothing to be ashamed of, in fact it seemed to be a family thing to cry easily.
As the visit progressed I realised that it was also national characteristic and basically we are emotional people who are not afraid to show their emotions.
A very simple answer, and yet for most of my life I have been made to feel that I was not in control, that I was a hysterical mad woman.
As this came from my mother, I accepted it as the truth; it was only after I had got away from home that I realised that it was not me, but my mother who was not ok.
But even so I still felt very self conscious and it is only really talking with Richie that I have finally accepted that I am ok.
I have always been ok, but my poor mother was not she was too disturbed by what she experienced in the war.
She and many others like her did not have any counselling or support so all the traumas suffered during the war was left untreated and unresolved.
And then we moved to England and she went on to valium which turned her into a pill addict and someone who became very difficult to live with.
The only way that I could cope was counting the days until I was 18 and then leave home.
Which I did, not too long after I was 18, and I could leave home legally and no one could make me go back.
I was free at last.
If only I could get away from my MS like that, if only there was a way for us all to escape MS.
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24 comments:
You show emotion that we all feel but are too messed up to express. You have real empathy and compassion and help us all with your honesty.
England is not a place that values honesty and openness and you must have been a challenge for many people.
Your poor mother had a bad time of it and was in condition to raise a child. You are an Erica survivor!
As for escaping- beam us up Scotty!
Wow, beautiful planet photos! And I love your post about crying. I can relate because I am going through menopause and the slightest thing will make me cry these days.
Another blogger posted today about snow-the weather really is crazy!
Hi Herrad!! I'm a very emotional person too and I cry very easily. I cry when I hear the Canadian National Anthem! I cry these days when I see photos of Prince Edward Island and all the wonderful English things that will be available to me! It seems to be every emotion I feel comes out as tears sometimes, like yesterday, it was my anger that caused me to start crying, then just realization that I was unwanted here and discarded. But it's very healthy to release these things, I always feel better after I cry. Hate the stuffy nose effect though!
:-)
I hope the weather cools down and you get a deluge of rain. We got rain all night and it's only 13 degrees right now at 10:30am! That's a little extreme though! Hope you are having a pleasant afternoon! xx
Oh yeah, I love the photos you chose today! Stunning colours and just space in general fascinates me! I'm hoping to take some astronomy classes in the near future! The debate....who is better, Kirk or Picard? I'm biased to Kirk, lol!
Aha! Another thing we have in common (besides MS, heat sensitivity, and hating tears in our ears) - A cousin named Aileen! [It is an unusual spelling here in the State, but she's mostly Irish which might explain it; wither that or my aunt can't spell!]
Our hot spell has come to an abrupt halt. I don't expect it to be in the 70's F. for at least a week! Hope you get some relief soon.
beautiful photos, herrad!!
i lol'd at this whole thing ‘’ glad to see you enjoying yourself ’’
it's okay! i cry all the time too! i cried all the way thru my daughter's wedding...but maybe that was because i was thinking about the bill!! lol!
& yeah, i hate heat now, but i used to tan all the time! sucks, doesnt it?
Hi Richie,
If only we could.
Hi Erika,
Thanks for coming by and commenting, its dreadful when everything can trigger tears.
It is supposed to be raining here all weekend.
Hi Rain,
It is a tiny bit cooler today, still nearly 30 degrees but somehow not as sticky and stuffy which is great.
We should be getting rain over the weekend, so one extreme to another.
You must be looking forward to moving to PEIsland so very much.
I think it is Kirk for me too but I also like Picard.
Hi Webster,
Always liked the name Aileen, her sisters are Kathleen, Coleen, Doreen, Maureen, the family background was Scots.
It is not as hot seems set to become 20 degrees and raining over weekend.
Think the temp will not be as hot again this summer, think we have had the heat wave now.
Could be wishful thinking!?
Thanks everyone for coming by and commenting.
Have a good Friday.
Love,
Herrad
LOL I love Kirk because it's William Shatner and he's such a funny actor, the halting way he speaks, sooooooo dramatic, ha ha. But yes, Picard had that accent and the verile look too, lol! I'm glad it's not so humid for you today, I hate that sticky feeling! Mind you I wouldn't mind some of that right now, I'm about to light a fire in the fireplace to warm me up! Yes, PEI is only a little more than a month away now...it'll be a tough waiting period, but I will do my best!
:-)
Hi Libby,
Lovely to see your comment.
It really does suck, it is a shitty disease.,
I enjoyed finding these pictures.
Hope you are having a good day.
Love,
Herrad
Hi Rain,
Think you described so well why I like Kirk so much cos William Shatner is such a dramatic actor.
Have you ever heard his Lp?
He does Lucy in the sky with diamonds.
http://www.youtube.com/watch?v=NN3MGN899yE
A month to go, how exciting.
Love,
Herrad
OMGosh Herrad, he's a national icon, so yes, I've heard all of his albums, lol! I giggled so hard at that video! Thanks for the link! You know that McGill University in Montreal named a building after him? Hail storm happening right now! I'll try to get some photos!
The storm came and went so quickly! It's now sunny out! I did catch some of it on video for you!
August Hail Storm
Hi Rain,
He is wonderful.
Thanks for telling me about University of Montreal.
Hail!?
Loo k forward to pictucers..
Love,
Herrad
Hi Rain,
Sounds very changeable weather from hail to sun.
Hope it is warmer.
Love,
Herrad
Just a comment to say hi and let you know how much I appreciate your posts and tell it like it is philosophy!
Your description of how the heat feels "very hot liquid" and the "golden syrup" is the best I have heard it explained.
You also remind me how blessed I am that I can move my arse around and it immediately snaps me out of any poor me feelings I am stuck in.
Oh yes, Captain Kirk.
I have always been emotional and I do not feel it is a weakness. When I hear you speak of how the heat affects you it sure does not do you MS patients any good. My son could not raise his arms to punch in the numbers to get in his art. If he was in his wheelchair he often just folded up. Herrad you are a trooper.
Hi Jan,
Thanks for coming by, it is nice to hear from you.
There can be only one Captain Kirk.
Hi Lucy,
Thanks for coming by and leaving a comment.
The heat has been terrible, it is cooler tonight and I can do abit more than yesterday.
Really appreciate you both coming by, it gives me such a boost.
Have a fine weekend.
Love,
Herrad
Maybe that's why the sea tastes so salty - and yet it makes us able to swim through life, impossible without.
Please have a cooler weekend. Over here at 10.00 temperature has nearly reached its 30 mark...how about a rain dance? Let's get all together and dance like crazy for rain.
Hi Rain,
That hail storm is very impressive , but not in August.
Hope it gets warmer for you.
Maybe it is good to watch the clip whenever it gets too hot here.
Hi Robert,
Lovely to see you comment, seems to be cooler tonight which is pleasanter for me.
Have a pleasant night.
Thank you both for coming by.
Really enjoy the conversations we have via the net.
Have a good weekend.
Love,
Herrad
Hi Herrad! I'm just stopping in to say "hello! I hope your day was a good one. My daughters have a joke that mom has to stare at the carpet/floor in airports, because I cry when I see ppl hug, when I see them reunite or leave each other, it's impossible for me to not cry. I cry when I watch movies, parades, you name it, and then of course to express my actual feelings, tears often precede my words, even if it's all happy talk! (so you aren't alone in that!)
Anyway, I hope the heat and muggy weather gives a break soon, we finally are at mid-60 degrees here, and it's cloudy. But it's pretty dried out from that heat blast.
Tell Richie, that I've created a new pie today, we had many ripe plums so I tossed them sliced with the peels on w/cinnemon, sugar and some flour, and into a pie crust, sealed it with another. I just took it out of the oven, and it smells really good. I will write later and say if it was good or not!
Stephany
Hi Stephany,
Thanks for telling me about you crying at everything too.
When I was still at home my mother would always worry me when I cried by telling me I was out of control.
Maybe the real problem was she was scared of emotions.
The plum pie sounds delicious wish we could come by for a slice.
The weather is cooler tonight.
It was supposed to be raining here today but it didn't, the weekend is supposed to be cool and raining.
We shall see.
Have a good weekend.
Love,
Herrad
Hi Herrad, My mom is the same way, doesnt like or show emotions, and at my dad's funeral she told me I wasnt allowed to cry! Healing happens with tears, it just does, then it helps us move on.
I wish you both could come over for pie too! :) I'd serve it with vanilla ice cream and we'd toast and cheers to each other, with something pink and sparkling.
I will always remember you, Herrad.
The only way that I could cope was counting the days until I was 18 and then leave home.
Which I did, not too long after I was 18, and I could leave home legally and no one could make me go back.
I was free at last.
If only I could get away from my MS like that, if only there was a way for us all to escape MS.
And yet in your mind, during some of your darkest hours, you are still going back. But with no escape.
We are the sum of our experiences. Change one thing, and the whole house of cards comes tumbling down. I find it best to embrace the past, learn what I can from it, and escort the uninitiated whom I encounter on that same path.
I'm guessing that Trini and working class British people have a pretty significantly difference in upbringing. Yet you and Richie have a found solid common ground and built a substantially meaningful life together.
Don't spend a whole lot of time wishing for a great MS escape. Know that as long as you can think, you can contribute. Hugs are caring. And discussion spreads what you've learned to those who will soon be in your place.
Hi Steve,
Great comment with lots of food for thought.
Did not realise I sounded like I was still stuck in the family home, you are right it is best to embrace the past.
Trini and working class British were different experiences indeed.
school shouting over aggressively at me
''ARE YOU A LESSIE?''
I was totally bewildered at the time and quickly denied whatever it was.
Found out later of course they meant lesbian.
Thanks for coming by and being so supportive and encouraging.
Have a good Monday.
Love,
Herrad
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