I have been trying so hard over the past week to find the time to simply write. Somehow, I have found myself unable to do even the little I would normally do in any given day. It is taking me an entire day, every day, to just manage my Twitter account. For some reason recently I’ve just been able to get up each morning, then sit here working my way through the twitter task list, that I’ve been using for years. Whereas I used to be able to be finished at around 1:30, giving me the rest of the day to sit writing, playing games or whatever takes my fancy. But now it’s been suddenly 4:30 or even 5:30 and I have done nothing but complete that task list, and I’m exhausted. I know that writing is just sitting here letting my brain drop out on to the page, but when you can’t even find that brain through the fog of fatigue, well you can’t write, moronic games are about all I can manage and I’m even finding myself frustrated by them.
So this morning, I grabbed the day and shook it into shape, even though I was up late, I was once more working well and I wasn’t letting my brain drift or disappear. Which may I tell you is really hard work. It’s far from the first time that I have gone through spells like this, in fact, they have been a constant occurrence from well before the doctors decided to give me a reason, that something I longed for things to blame them on. What I have noticed over the years is, there is only one thing you can do and that is go with them. Yes, you can shake yourself out of it for a short while, but it just comes back and your once more sinking into this quagmire that feels as though there is no way out of. So if I start to ramble, please forgive me.
I’m still fighting with the freezing nerves, it doesn’t matter how many layers of clothing I wear, at some point in every day, I will lose the fight and I’ll be in agony again. I have slowly found that the layers were actually too much. Yes, they helped my legs, but the rest of me would be pouring with sweat. It has become this never-ending game of altering what I am wearing, to deal with how things are at that second. Normally, I can wear less when I’m sat at my PC, as I have this high powered gaming machine that throws out tons of heat, sat right behind me. My legs though need those extra leggings and socks, sometimes, I’m even having to add one, two or even three wheat-bags, which I heat in the microwave. It is the evenings that I am finding the worst. I am literary strapping the wheat-bags to my legs inside my blankets while sitting in a tee-shirt and thin strappy dress. I can’t imagine that I’m cutting much of a pretty picture for Adam. Mind you, I bet he’s quite used to his rather odd wife by now.
I don’t think that my freezing nerves are helping much with my being exhausted as I am wasting so much energy daily just putting on and off clothes. I know that just going to the loo is a total nightmare. Freeing myself from the layers then sorting them all out again, often leaves my arms dead and hanging limp at my sides. When you have spent so many years just working out a routine that leaves me with enough energy to enjoy my life. It takes so little to knock this out and it’s so annoying when it happens. There is though one other factor that until the other day, never entered my head.
Due to things out with anyone’s control, mainly sickness or accidents, there have been continual changes with my carers lately. One of the women they sent as a replacement after her coming here for two weeks, I eventually chucked out of the house. She was a total waste of space and I landed up doing more and more of what was supposed to be her job. I would never have thought just a few years ago, that something so simple as the people I am used to seeing, being replaced, would actually cause me to be exhausted, but it does. The need for consistency in my life seems to be growing and I have been spoilt in the last two years as that is exactly what I’ve had. I knew on which day which people would be here, and that they come in the front door prepared to do what they always do, no need for me to stand over them, or teach them, or even explain anything to them. Now, who knows. I do know that I have lost one for good, she had an accident in December and has been trying to work ever since but has no decided to cut her hours, something that means she won’t be here anymore.
It will all be sorted out, but that doesn’t help me right now.
Two Rooms Plus Utilities 
Spot on Pamela I can absolutely relate to the writing bit, and being cold all day and sweating profusely at night. Sorry about the carer situation. Keep on doing what you’re doing, going along with the way you feel, to do anything else is just too exhausting x
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I know that I have no choice in these things but if the fatgue would leave me alone until my legs settled down, I’d be coping so much better 🙂
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Pam , Are you still there ???? We are so worried about you . No twitter or anything . We miss you friend . If you can please just say I’m here …..With much love for my friend , Brenda. Flippen
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Excellent post . I am suffering with freezing nerves, it’s agony so you have my empathy. I have decided this year , after my world shrunk to my bedroom that I had to take control or die ! I have lost 5-5 stone and nobody in the medical profession thinks it’s a problem… I am a size 8 due to gastro comorbid condition, so I make myself walk every day, in all weather! “Winners never quit and quitters never win “ stay warm and strong 💪🏽
Big love
JJ Kane
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Sorry you too have freezing nerves, it’s really no fun. You are so lucky that you can get out and walk, but it kills one of my theories. I was wondering if they were playing up so badly due to my inactivity. Oh well, another one bites the dust 😦
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You may not have read my other reply but I have spots of cold, not the all over coldness you feel. . Mostly on the tops of my thighs and tops of my feet. But mine are caused from degenerative disc and joint disease.. Mine was easy to diagnose. Not easy to live with. That on top of the pain and fatigue ,, well, you know. And my problems are only a tiny speck in the universe compared to yours. I so admire you for dealing with the monster they call M.S…I dont know how you do it. I have said it multiple times, you are my hero!! I have to add that my hubby, Joey, was also very brave and stong when going thru chemo.❤❤❤ He has been thru so much with me and now this cancer. But his last scan was CLEAR !! I cant believe it from stage 4 to clear. But to be honest he went thru hell with the combination of chemo drugs they gave him. really wrecked his body. But thankfully he has been getting stronger and feeling better a little at a time..His hair is coming back really good also. He has gained weight which also helps him not look so sick. Everyone was so generous with all the help they gave us. It was a very humbling experience to go through. I had nnever had to rely on others for financial help and it was hard to deal with, but an absolute necessity. Well so much for catching up on our life. And thanks for the kind comforting words you gave me before.😘 Take care of yourself and write another post when you feel like it. Meanwhile we will all be here cheering you on and sending loving thoughts and prayers your way. As always, Brenda☺❤
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I love you, Pamela. You have a kind heart and share it with more people than you know.
Blessings,
Cindy
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Thank you 🙂
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Good luck regards your carers, hope they give you ones that have the staying power, trouble is life gets in the way for everyone and have to find a different route to the way we live and carry out our daily duties. I can understand your frustration going through the same ritual of explanation to new carers when you are so fatigued and in pain, my mother was just the same, she had so many different ones who were really quite useless, in the end she sent them packing. Between her and myself we managed xx
I bet there are plenty of people here reading this can relate to this problem,
Great newsy update, superbly written with plenty of warmth to us all, thank you. X🌷
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I wish coping without them was an option, I’m a danger to myself in the kitchen and if I want a hot meal, someone else has to do the cooking bit. I was trying to be helpful the other day and I took something out of the over and burn my hand before I got anywhere near the food. Suffice to say, it remained in the oven. 😦
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Reblogged this on Musings On My Life.
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Thank you 🙂
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Hello Friend !🙋🏼♀️ So glad to hear from you . I look forward to seeing you in my email. Most things I just flip thru and delete. But not you. I can relate to the hot and cold thing. I still sweat just thing sometimes can bring on a good drenching!! But my nose, hands and feet are freezing. So I wrap up and almost immediately start sweating. Go figure… Be careful around the stove. I have scars all over my hands and forearms from not being careful.
Waiting patiently for more of your thoughts. Brenda in Alabama!!!
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Hi Brenda, You have nothing to worry about, I baned myself from cooking a couple of years ago. Like you I was burning myself almost ever time I went near it and my lack of strength meant I was starting to drop things regulary. Which put even the microwave inside the same ban. Now it’s a case of unless Adam or one of my carers is here, it’s nothing but cold food and drink, but I’m used to that now.
Take care and I will write again soon
Pam 🙂
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Yes breaking things especially early in the day is a normal occurance for me. And when I break something that’s supposed to be uncreakable , well I just give up. It’s really no big deal anyway. I just buy plastic things now .😀 See ya later !
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🌺 Hi, Pamela. What a pleasant surprise to see one of your messages pop up in my notification window today. About the “…moronic games,” DO ignore them, as games serve no purpose at all. (We are having what I feel is odd weather today; constant drizzle. Not wishing to sound like a Dr. Seuss ~ ha ha ~ I do not like it!) There are happier days & nights ahead for us. Hang in there!
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Good to hear from you,despite not all greatest news. Maybe limit Twitter time? So you have more free time? Getting carers and the right carers can be a trial. Whenyougdtitrightits perfect andthey will make your life work not make more work of life. It’s good to be very clear when negotiating with agencies. If you want some more advice email me directly? “hfantastique@gmail.com.au” Cheers,H
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I’ve never heard of freezing nerves but I have a chronic illness called Myasthenia Gravis that has blindsided me and altered my world & my writing. The fatigue and search for words that used to come easily have stretched the mind into further fatigue. Just trying to get a handle on things….a struggle. Thank you for sharing. Be kind & forgiving to yourself.
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I’m sorry for your diagnoses. I don’t know very much about Mysthenia Gracie. I will have to look that up . But it sounds awful. Hope you are as well as can be. Brenda Flippen
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I didn’t get a notice you had posted so I missed that you were writing. 😪
I have missed your blogging, but understand if you can’t keep it up, I am having a hard time posting just once a week, so i miss some weeks. 🙄 Just wanted to let you know I miss you and I care.
I haven’t been on Twitter in quite a while really, I had to walk away from most social media and news reports because of Trump and so much anger being spewed , it was jeopardizing my mental health.
Love to you. Wendy
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Just bear in mind that (y)our Trump is a distraction. 😉
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Hi, checking in and yes again empathy, well put all round. X
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Hi Pamela,
I haven’t been reading your blog for a while. Life has a habit of getting in the way of the best intentions.
I couldn’t help but notice that you don’t appear to be blogging as often as I seem to remember you doing. I hope that doesn’t mean that your health has deteriorated further.
I am sure you must be feeling the strain of living in this scary Covid world. Many people feel isolated because they can’t go out. But you and I stay home anyway so it doesn’t really make a difference.
Keep tweeting and blogging. Wishing you all the best.
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