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How long is forever?

swilkinson

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This afternoon I went to the Lymphoedema Clinic for the first time, I was anticipating getting some of my most pressing questions answered. I had done what everyone does, gone to Dr  Google for my answers about the relationship between lymph node dissection and lymphoedema. Most of what I found related to breast cancer but that is understandable as the breast cancer girls pioneered the use of lymph node surgery. I am very grateful for that and the surgeons who pioneered the treatment.

 

The girl who I saw put me through the usual paperwork, I am getting used to it now, taking them step by step through the discovery, diagnosis, surgery, recovery etc. Then there was examining the wound site, taking the measurements of both legs etc. Then she asked me could she call a colleague in and the colleague explained that I would have a new pressure stocking, measurements would be taken six monthly and on and on. I was a bit puzzled as the surgeon had said I would have the stocking at least until the end of October, so I mentioned this. The colleague laughed and said : " I don't think so, this is forever." And I burst into tears. 

 

The girl who had asked me the questions was dismayed and tried to calm me down. I'm sure they thought I knew this was a possibility. But I didn't. I assumed the condition would settle down and I would only be wearing the stocking for long distance traveling once October ended. I guess it is like any diagnosis, I found it af bit hard to swallow. Initially it was devastating. I thought it was a case of accepting the changes, having some physio and then a new life with a new normal. Silly me.

 

When the colleague has gone back to her room the original nurse Connie explained that certain factors like getting overheated, stressed, tiredness and overuse of the affected leg can cause the lymphoedema to spread. So it was safer to continue to wear a pressure stocking.  Dr Google didn't tell me that. So I now have to get used to the idea of having this condition forever. I can still take the stocking off for short periods of time, wear gym pants which will apply some pressure for swimming, walking on the beach with my grandchildren etc but a lot of normal summer pursuits will have to be carefully monitored because of the  possibility of overheating.

 

I know a lot of my friends will pat me and say "never mind" but I do mind. It is another body blow, another little death, the death of summer dreams. Just the thought of finding some place to change in and out of a pressure stocking near a beach kind of denies being able to do anything without prior planning. "I'll just be five minutes, well closer to an hour I'm afraid." Nothing spontaneous about that is there? Okay, I know that is the case for a lot of stroke survivors so I am lucky, but I need time to get used to the idea.

 

And that kind of sums up the last couple of decades, changes that I have had to get used to. And eventually I do. But not without a fight usually. Sorry as I am about my inability to adapt to every new situation. Maybe body image is still one of the issues, I want to look and feel as good as I can for my age and circumstances. I guess we all do. I know some people are able to relate to this and others will find it difficult. After all I still have the use of both my legs.

 

How long is forever? Nurse Connie said it is like today, tomorrow, the next day and the day after that, if I can  think of it that way it won't be so hard. Perhaps the survivors will understand that. I can in a way. I did a lot of that when I  was a full time caregiver for Ray just looking a few days ahead, not too long ahead or I couldn't adapt to the sudden changes. And we all know how suddenly life can change. Hopefully this won't be the case for me. Until the next set of tests I can pretend nothing else is going to happen can't I?



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Sue I think it is perfectly normal and it does affect your freedom in the future. I feel like I very much understand your emotional reaction. This may be a stroke support web site but we as humans can go through so many things that affect us emotionally, health wise, and our future expectations. We all have the right to feel what we do and process our new truth or knowledge. Just like stroke acceptance can be a rough road. We are all here for each other and that will always include you. Hugs my friend.

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Sue :

 

I so know change is very hard like being in wheelchair at 34 or need to use cane now due to meniscus tear, but remember this is card we are dealt with & have to play hand we r given to best of our ability, so right now you have to wear compression socks, but you can still walk dont worry about what others think no one has time to think about others but themselves. people can say & whisper things, we have to do what is right for us. I know it feels like death of how we viewed ourselves growing old, so grieving for it is normal, like everything else in our life change happens in our life whether we like it or resist it, but what I have noticed when I go with flow without resistance life feels like joy than punishment.

 

 

 

 

Asha

 

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Hi Sue, is there a reason your compression stocking would need to be changed if it got wet? If it's tight enough to be effective you shouldn't have to worry about getting sand inside it at the beach.  So why not just go swimming with it on if you want to be spontaneous.  Be like the football players who wear their compression shorts under their normal shorts.

 

Also if you are getting the white ones why not dye them to make a fashion statement. I know leggings are probably not part of your current wardrobe but if you can think of the stockings as leggings it may be less of a blow to your fashion sense.  Also lycra leggings should slide easily over the stocking, and you can get lots of different colours and patterns in those. and wear dresses or tunics over them, treat them like fancy tights.

 

I know this is hard as it is not what you were expecting.  You now need to start thinking outside the box and work out how to adapt to the change. If life gives you lemons etc.

Given this is about your self image it's probably not going to be quick or easy, but you CAN do this.

 

-Heather

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Heather, the problem with getting the stocking wet is that it will chafe the edge of the scar behind my knee which is 9cm in diameter, quite a big wound, and with quite a bit of nerve damage around the rim. I can pack it with cotton pads for day wear but that would present another possible problem. I will work on finding a solution though, I am sure to find some kind of gel pad that fits the space.

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That does make it tricky in the short term, hopefully the scar site will  get less irritable over time although if the nerves are doing silly things that's going to take a long time.  On the bright side winter is here now so beach time will be limited for the next 8 months at least.

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Sue, 

  I think after you've worn them for some time, they will be like second skin. Yes, they can be challenging to put on, and take off , however knowing they are going to be beneficial for your livelihood.  Just focus on healing that wound before getting it completely wet. Start off with short goals. Using shorter goals helps to make the "forever" day by day :)  I can only imagine, they way I would feel, having had to change your life for Ray ( I'm not blaming) and finally had your 'you' moment only to be taken away would be a blow and that is understandable. I mean who wouldn't.. I know I would but day-by-day. Change for anyone is hard-but we always  persevere:hug:

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Kelli I hope you are right and it becomes routine. If there is nothing I can do about it I will just have to get used to it.

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Sorry, Sue.....by now you are likely feeling like an all-wheel drive vehicle, having to get over all the bumps in the road.   Life isn't fair, life sucks, and yet, somehow you always hold your head up and go on.   We can scream to the top of our lungs, pitch a royal fit, get it out of our system and feel better for the moment, and then move forward adjusting to the new normal.....you've been there before, you can do it again.    Praying that things will go smoother than you anticipated.

 

Sarah

 

 

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Sue, understand what you are going through. My Mom used to tell me "who said life be a rose garden". we know that is true, but we are also human , so have your cry, have your sulk, then my dear put your "Game face On" .  You will , because I will always be thankful to you when I first visited the site, and you helped lifted me up.  Things happen to make us stronger.

God Bless

 

Yvonne :hug:

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Sue, I go to lymphedema clinic too. I could not stand to wear the stocking...I would swell,scream take them off...so I had the leg wrapped in ace bandage, oh boy more swelling in a few hours,more screaming hurry get this off. So they bought me Circaid juxta compression....It is a velcro wrap and wearing ankle stocking. This is bulky ugly,impossible wear with shoes.

Forever lasted in bursts. If I am sitting with raised leg and can find another set of hands,I wear it, but it barely helps me sadly. 

 

It is all those little deaths, so many since stroke, like a switch was pulled. And they drop diagnosis bombs...it is not them, and they say it all day, and then look at you like you gotta problem if you cry. 

 

For me finding out this fungal thing, psoriasis was my big shock....how many creams or scalp treatments including smelly shampoo and forever now, outbreaks triggered, itching red ugly. When does it stop??

 

It wears down the soul, but we endure with a bit from friends.🌻

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Pam, mine is a mild case as it is only the left thigh, the wrap for flying is awkward but not painful but I did get cramps in the upper thigh for the first time on my flight home this time.

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