MPN Voice
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Trying to Hibernate

Hello All, it's been a good while since I posted and some of my long standing Forum friends might be wondering if I'm still kicking and breathing. I am !. However I am struggling greatly with my impaired vision, so much so it took me several minutes to seek out the link to make this post. Also I may have a corneal abrasion on left eye which is rather uncomfortable. Apart from that I'm not too bad on the whole.

I tend to rest my eyes alot of the time which leads to me nodding off so I'm sleeping more than I really want to. But part of me wants to Hibernate the Winter and like the Dormouse awaken in spring . I thought I might have had one of my cataracts removed by now but no joy. Had pre op assessment on 2nd October. Thing is they are getting progressively worse.

I keep singing a chorus of "Always look on the bright side of life" to rally my spirit. I want to take this opportunity to wish all my friends old and new who supported me through my more difficult times and all Forum members a very Merry Christmas and a Happy Healthy New Year.

Chris x

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Hey Chris!

You know, it must be telepathy, I was only thinking, "must email Chris and see if he's still around. "

Must admit I did wonder if you'd fallen off your perch! So pleased to see you're still here........ rotten news about your eyesight, what a bummer that is. As always you're still such a bright spark.

If the weather's as grim in Blackpool as it is in Windermere, you're missing nada. I'm trying to gear myself up to go for a walk in the gloaming between cooking like a mad un.

No news really, life bumbles on. I keep googling places to go for a bit of warm weather, and then think, can I be bothered with all that faff of the airport? Easier to light the fire, stay put and eat cake.

No hope!

Hope you have a good and happy Christmas- and all the best for a happy and VERY healthy New Year.

Love

Louise

xx

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Xx💖xx

You know the rest

Happy Christmas 🎄 x

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Great that you can think about posting Greetings when you are not feeling marvellous....So sending you the Best of Best wishes for picking up soon and that you and family have a Joyeus Noel. Keep your strong spirit,Spring will soon be on its way. Sallyxxx

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Ah so good to hear news of you Chris - because you are right the old timers on here think of you often - and I too was just thinking a few days ago what's happened to the JediReject 😀- you have been of immense encouragement to all of us - so you must be our Star Member in that regard 😀😜 - keep going kid, you have achieved so much these last few years and are cared for with much fondness by all. All the best to you and your good wife. Jill

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Hello Chris, Really good to hear from and I so hope you have help with you eyes soon.We all have so much respect for you. Take care Bye Gill

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Hi Chris, so great to hear from you. Once you get those eyes sorted you’ll be a new man! Every best wish and a ton of E hugs to both you and your wife. Kindest regards Aime xx😺😺

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Thank you for updating us. I have been wondering how you were. I’m so sorry you haven’t been able to have the cataracts removed yet. Is that supposed to restore your sight? I have just been put on the ‘priority list’ for a transplant myself. Wishing you & your family a Merry Christmas and Happy, Healthy New Year also. ~gail

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Gail there is nothing to fear with the transplant process, so don't worry too much .. You obviously have to sign up to the treatment regime and 4 weeks isolation which gets a little difficult at times. Anyway you know where I am should you need any advice or support along the way.

Best Wishes - Chris x

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Thanks Chris! I may well do that. Hopefully your eyesight will be back in Jedi form by then! May the Force be with us !

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So glad to hear from you Chris. I hope that you and your good lady (and your family) have a good Christmas and New Year and that you get a date soon in the New year for your cataract op. Let us know how you get on. It's always good to hear from you and we do think of you and miss your posts. All good wishes Lizx

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Hi Chris,

Happy xmas to you and your family. Hope you don’t have to wait too much longer for cataracts to be operated on.

Mary xx

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Well this is a lovely surprise Chris, was only thinking about you only yesterday and wondering how you were doing missed that great banter. Sorry to hear that the old mince pies are playing you up, my husband had both eyes done last year, he can now see me 🤪 not sure if that is a good thing, but he was really struggling, but now everything is so clear and as he says colours are so pristine he is not in a fog anymore.

Are you spending Christmas with family around you and your wife, can still remember photos she took of you when you were in hospital, you still had a smile on your face, considering what you went through.

So Merry Christmas Chris and a happy and hopefully healthy New Year, great to hear from you,

Jean x

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Hi Chris happy Christmas good to hear from you best wishes Poppy

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Dear Chris, BOY, it’s always such a treat for us when you post. And today you’ve given us all an early Christmas present.🌲🌲 You’re always in the back of our minds but we know that your eyes have made posting extremely difficult. And it sounds like yours must be painful with a possible abrasion. I’m so sad that you’re having to wait so long for surgery. You must feel like screaming like a banshee and pulling your hair out in frustration. It reminds me of how my very catholic father would tell us to “offer it up” when something was difficult because you could reduce your time in purgatory and get to heaven faster. Given all the hardships you’ve endured and the remarkable patience you’ve displayed, I think you’ll skip purgatory all together if it exists. Frankly, it wouldn’t surprise me one bit if they make you a saint any day. Know that your supporters here send love and strength your way today and often. I hope you and your family have a really good Christmas and New Year and you get news soon saying your surgery is scheduled. Xoxo Katie

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So sorry to hear of your eye problems.

In England there is an organisation called envision.

They are a support group that is linked with sight issues.

I hope you are able to enjoy this festive season and perhaps 2018is more fruitful for you.

In our thoughts.

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Great to hear from you Chris, you’re quite the inspiration you know. Hang in there.

All the best to you and your family for Xmas and especially the new year. Jx

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Hi again Chris, the phrase you used, “always look at the bright side of life,” gave me an idea. I hope you don’t think it’s crazy. Have you tried “””watching””” any movies that you know really well so you could enjoy listening to the soundtrack & remember enough of what the picture is even though you aren’t watching it? Some soundtracks, like Life of Brian, might be enjoyable by themselves. And you could get pleasure with your eyes closed. Also, have you checked to see if there are there movies available to rent for sight-impaired people where the sound and action are narrated? Just an idea. Katie

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Hi chris it’s so good to hear from you. Sorry to hear about your eye problems and I hope you get your op’s soon. Have an amazing Christmas with your family, and here’s hoping for a happy and healthy new year for us all. Take care lovely man.

Karen x

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Hi Chris

Since all his publicity about the new Star Wars film, I've been thinking of our own Jedi! I join with everyone else in hoping for the eye op. as soon as possible. Your courage and patience and lack of self pity are a lesson to us all. I wish you and your family a happy Christmas and a clear sighted New year.

Sandra

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Good to hear from you! I hope you are able to read all your replies. It will be great when you get your cataracts done. My aunt had hers done and then had a real go at me - she said I had told her she didn't look her age, but when she looked in the mirror after having her eyes done all she could see was an old woman - she was 92!

I wish you and yours a wonderful Christmas and hope 2018 brings you good health.

Best wishes

Lizzie

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Thanks for your encouraging a nd helpful responses. I take fortitude from them. Also for the thoughtful suggestions. I can watch TV on my tablet and enjoy shows like the chase and eggheads which I can listen to without straining to watch. We have a local N Vision but I haven't used their services yet, they supply visual aids. I use magnifyer to read texts and letters but if the print is jaint I can't see it.

I try not to let it dampen my spirit because there are those much worse off and hopefully my sight can be restored though I still have GVHD in my eyes which makes them very dry and gritty. A friend at clinic has it in her lungs which are down to 20% function and she is on oxygen concentrator 24/7. I feel for her. I'm taking a cocktail of drugs still including Ruxolitinib and all with no apparent I'll effects. Lucky me.

Take care and may your God go with you . Chris x

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When you do manage to have your cataracts done you will notice such an improvement. I had mine replace some years ago and it was such a joy to be able to see properly again. Both operations were after MPN diagnosis but this was not thought to be a challenge . I did not even have to stop the Clopidogrel for a few days.

Good luck and Best Wishes for Christmas.

Sally

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Hi Chris. Like many others have said I too have been thinking of you and wondering how you are doing. SO good to hear from you, I miss those wonderful posts of yours. I was hoping that your eyes had been sorted, so let’s hope that your cataract can be done very soon.

I wish you and your family a happy peaceful Christmas. Most of all I really hope 2018 will be a year of health improvements for you.

With love and thoughts Sandy x

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Hi Chris, only have to look at all the replies you have had, to know yet again how greatly you are held in all of our affection and respect and admiration. So hope, like the others, that the cataracts can be done soon and that you can at last have help with your precious vision. Adult son's Christmas treat was to go to Star Wars and immediately you came to mind....know everyone is unique, but some seem more unique than others! and one of those is you!

May God go with you. Every blessing. Tinkerbell

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Happy Christmas to you and your family Chris. Lesley x

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Hey my antipodean friend... :)

Yes, I have also been wondering where & how you have been of late.

Sorry to learn that your eyes are giving you some much unwanted grief, & I hope that they might improve into the future...

Learning about you being 'on the nod' so to speak, makes me think about my recent controlled trial of Cannabis Oil (CBD). Recently, I returned from a trip around SE Asia, (Cambodia & Thailand), and because my bone pain was much worse, I decided to acquire & short trial the CBD oil/s.

Well, on the upside, it does really help with the pain, however, (& for me at least), there are a few downsides too...

Firstly, is the exacerbation of my fatigue. I really struggled to get out and stay out of bed over the circa two week period, & that only made me feel more depressed...

Secondly, in that very short period of time my appetite appreciated to the point of adding circa 2-3kg - Really fast & yet I was still only eating in the evenings...

You see initially Chris I had wanted to try what is referred to as CBD, however, the recommendation by the providers was to take the THC drops, & to build up an accumulation of them into my system gradually. Not sure if you are aware of much about Cannabis oil, but the THC is an acronym for Tetrahydrocannabinol referring to a psychotropic cannabinoid that is the principal psychoactive constituent of cannabis.

CBD oil, on the other hand, Cannabidiol (CBD) is one of many cannabinoid molecules produced by Cannabis, second only to THC in abundance. These plant-derived cannabinoids, or phytocannabinoids are characterised by their ability to act on the cannabinoid receptors that are part of our endocannabinoid system.

Hence, that shall be my next trial, & I shall make a full report once I have trialled it for the same period etc... Therefore, I too am hoping to brighten up my life, as you say best to keep looking for those silver linings buddy...

Very best wishes to you & yours Chris...

Steve

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Sorry to hear you are still having to battle away but pleased that you are still battling away. TV quizzes are good and so are radio podcasts, my favourites being Danny Baker, Fighting Talk, Desert Island discs and money box as I try to balance the books! 😀 probably need an accountant to keep track of the dresses and invoices flowing in and out of the house as Lesley tries to find a dress for a transplant buddies’ wedding in New Zealand next month. That’s meeting a lot of people we won’t see again, bride and groom excepted, for a few hours. Goodness knows how many dresses we’ll see as she plans for our youngest sons wedding later this year! Might just take a tent and live in Oxford Street for a coupe of months!

You are still on my list as someone I want to meet as I have enjoyed your musings and support here.

Take care and have a good Christmas.

The other Chris. With the Princess Leia (actually Sarah) stem cells.

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What a lovely surprise! Altho I am sorry to hear of the problems with your eye. I caught the tail end of a news item about two weeks ago, that here (Winnipeg) they tried out a new method re cataract surgery where it takes a much shorter time, and then you get up and go afterwards. I'll have to google it because I've been told in the future I'll have to have an eye done. I do enjoy a good book and a good movie so I'm sorry that your eye is painful. Does an eye patch help? Anyway, I don't log on a lot so I was really happy to find that the post was from you. Here we are not knee deep in snow we do have snow, but it is very cold, in fact my husband has just called down and told me its 27 below - yes hard to believe - I'm trying to get motivated to go to an exercise class - which I hate doing but I know it helps my body. So Happy Christmas from a chilly climate. I hope your eye problem gets resolved soon. All good wishes to you, your wife and your family and I hope your grandson is thriving.

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Chris good to hear from you and you still have your dry sense of humour.

Merry Christmas and hopefully next year will be a better one for you.

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Wishing you well Chris and a quick cataract appointment. Keep your spirits up....

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I am trying to remain upbeat . My respect for people with poor vision and blindness has rocketed up after experiencing how challenging it is, . All the best for the coming year. . . Chris

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