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Coping with disability

Neuropathy

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#1 Kamlesh

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Posted 17 November 2013 - 04:21 PM

Dear Friends,

I have been on disability  for last three months and finding it difficult to cope with  issues  such  as  Neuropathy pain. Also, end of work is causing issues such as loneliness.

 

Pain  is  so unpredictable that it  makes it difficult to plan anything

 

Any suggestions? 


Kind regards,

Kamlesh


#2 miocean

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Posted 17 November 2013 - 07:27 PM

Kamlesh,

I have no answer for the neuropathy pain. I have a friend who suffers from it terribly and has tried everything to no avail. She was always very active and now has trouble walking and is very depressed as a result. 

 

On top of that you are dealing with the loneliness of not having the social network at your job. I can relate to that. I had put all my identity into my career so I lost a part of myself. Instead of a highly respected professional I became the sick person (in my mind.) It took time to move beyond that and realize I was more than just my job. My close friends and I still get together a few times a year but it is not like the interplay you get day to day. They are busy with their jobs and their families and it is hard to find time. Since they don't see me every day they don't think of calling.

 

It is hard to get involved in new social settings, especially when you are not feeling well. I have found online activities, like this forum and another I use, as well as social networks help me maintain a friendship relationship with others. It is very lonely sometimes even with a husband to do things with. I miss my girlfriends and sometimes don't understand why they don't return calls or contact me.  It seems when social situations do take place they all happen at once! 

 

I do go to a counselor which helps me work things out. I try to reach out to new situations but even then it is hard to make new friends.

 

It has been 9 years for me and I have sort of adjusted to it. I am glad you got your disability approved and hope you find some ways to fill your time.

 

miocean

 


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#3 Sticky

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Posted 17 November 2013 - 07:54 PM

Well, I've been down for a year and a half now. Its a hard thing to do learning to slow down. I fought it like a wild dog on a chain but got better as time passed. Finally I just learned to let go of what once was.

 

I try to not do too much of one thing at home, read a little, watch tv a little. I keep a three plants that does not require much work to water but just enough to check on them. I also just returned to an old hobby I had as a teen, aquariums :D

 

I had done all the design and had a friend help with setting it up. I use a siphon hose for water changes so no heavy lifting :)

The aquarium works in two ways. When I'm down and in pain I just watch it for hours. When I'm feeling good I can tinker with it. Plus feeding my fishies each day gives me sump'n to do and not hard either.

 

I have four Florida Flag fish and two Blue Spotted sun fish and a electric blue crayfish! Its really is a stress reliever and a place to get my mind off of things. I designed it where it literally looks "alive"  with a river current that gently moves the plants and gives the lighting a vivid effect.

 

Try to find things that work for you. Ask your self what will relax you and provide a way to pass time yet not  be demanding.



#4 Joelf

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Posted 18 November 2013 - 05:41 AM

Hi Kamlesh,

 

Although I'm very pleased to hear that your disability claim was successful, I'm sorry that you're suffering with neuropathy pain and loneliness.

 

I'm thinking that perhaps being out of the working environment, in some ways, is possibly not helping with the pain you suffer, as it does now leave you with more time and nothing to take your mind away from the discomfort. Many years ago, I worked in an office environment and when I left, I certainly didn't miss the work, but did miss the general camaraderie and socialising we used to do. However, I did find that other things filled my life and now working on the forums gives me endless pleasure and joy. Likewise, my husband retired a year ago after 46 years; the poor bloke hasn't really had time to miss work, as we've been so busy decorating and doing all the things he never had time for whilst working. He says that he's simply swopped one project manager at work for one at home (me!! ;))

 

Miocean and Sticky have made some great suggestions and I do hope you will soon be able to adjust to your new situation.

 

Kind regards,


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#5 Kamlesh

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Posted 18 November 2013 - 01:31 PM

Miocean, Sticky, and Jo, and  others,

 

Thank you for your response.

 

I have applied for Social Security Disability and I was denied first time. However, I have taken long term disability from a private company while working and it came out to be  a blessing as they have approved.

 

Also, they are helping me with my SSDI claim.

 

I  love to do gardening, watch TV, and read books. I have a bookclub once a week with friends and  we are reading a book.

 

I continue to struggle to keep pain under control as well as side effects of medications.

 

Thank you all.


Kind regards,

Kamlesh


#6 Amanda Thorpe

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Posted 19 November 2013 - 04:53 AM

Hello Kamlesh

 

Drugs like gabapentin/pregabalin can help with neuropathy. You could also try duloxetine, as with the other medications they are not painkillers but have, as a side effect, pain killing properties. I know a sclerodermian who tried duloxetine briefly, took one dose and had the most pain relief they'd had in years. Unfortunately a bizarre side effect is dilated pupils, like freaky lookin' dilation and they stopped because of this.

 

I retired after 20 years in the same place, it was such a relief to get the retirement that at the time I thought of little else. Eventually the grief hit me and 6 years on still does every now and then. I don't haven to worry about how to fill the time because I have wicked fatigue and sleep hours every a day, I guess there is some benefit to fatigue! I also had grief counselling last year and you might want to consider this, I found my grief coming out in my behaviour so had to address the issue.

 

Eventually you will feel this relief of retirement and I hope you enjoy yours as much as you can.

 

Take care.


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#7 Kamlesh

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Posted 20 November 2013 - 11:51 AM

Hi  Amanda,

 

Thank  you.  

 

I  have tried duloxetine known as Cymbalta  as well as Lyrica. I  have an excellent pain management  doctor and he has tried most of the medications, I had success with Lamictle, but once I got skin rashes the doctors  have ruled it out due to risk of Steven Johnson syndrome.

 

Currently, I am trying a pain patch but it is similar to pain medication, I have too many side effects.

 

Thanks


Kind regards,

Kamlesh


#8 Shelley Ensz

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Posted 21 November 2013 - 02:45 PM

Hi Kamlesh,

 

Adjusting to disability can be quite a challenge.  It's important to realize, as you already have, that its not necessarily quite as easy as it would seem.  I adore any sort of work, even hobbies that are absorbing, because to me they are the best pain reliever of all.  It is when I come up for air that I notice the pain returning in full force.  So any sort of self-assigned "work" that you can find will probably be helpful, whether it is adopting new hobbies or even assigning yourself chores and tasks around the home.

 

The comaraderie of work, with its built-in friendships and interactions, may require more of a plan than only a once a week book meeting. That is a great start though!  Do everything you can think of just to rub shoulders with the general public.  Become a regular at a coffee shop.  Visit libraries and bookstores when you are capable of it. Figure out your usually better time of day (we all have better and worse times, due to circadian rhythms) and try to use that time for being with people or at least out in public.

 

I find it helpful to make flexible plans, too.  Such as, make a plan to have lunch out with a friend, but with the caveat that if you aren't entirely up to it, maybe they could come over to your house instead. I've had my friends bring over take-out, and even invited them to sit by my bedside and talk for awhile.  If you have a lot of phone calls to make, try to spread them out so that you can talk to at least one person a day rather than make all the calls at once.

 

For exercise, even if you can't walk very far at all, try going to a dog park, even if you don't have a dog.  It is a trick my husband and I do often!  People and dogs at the park tend to be friendly and open. You can always ask them about their dog to start a conversation.

 

This is the absolute most perfect time to take up a new hobby.  Register for adult ed classes in anything you might be interested in.  Photography is great because it is something you can do anywhere and requires hardly any energy at all. Photography classes would give you a way to meet even more people. Try to catch some action shots of dogs, at the dog park. Maybe next year you can have a coffee shop display your Dog Park Collection.

 

Music is another great stress buster and something that can be "done" while you are doing nothing. Pick a genre and begin "studying" it by reading up about the composer or band while listening to their work.

 

In other words, let your imagination soar.  This is a time to follow a dream, as long as it is not too taxing physically.  And the more you get absorbed into learning something new, the less you will feel pain -- at least, during the moments you are fully absorbed.  When you come up for air, then all the bets are off.  But I find ways to stay well absorbed most of the day, and I am sure that given enough time and dedication, you will too.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
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#9 debonair susie

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Posted 22 November 2013 - 09:41 AM

Hi Kam,

 

It has been MUCH too long since you and I have chatted (in chat); though I'm SO glad , on many levels you have posted, I am ever SO sorry you are down enough to be on SSDI. I remember you were struggling, even back when you and I last chatted, trying to work through it all. With your busy (traveling) scheule, due to your line of work, I always was concerned for you, with regard to your pain/energy levels.

 

Now... I want to commend miocean for her EXCELLENT post, speaking very well to your ever-present circumstances; I feel she addressed them very well, offering awesome suggestions that were VERY helpful, with regard to your situation.

Adjusting, finding what works/fits for you will take time, but it will all be on YOUR time schedule! I feel quite confident you will find your  (social) niche and emerge victorious, as you impress me that way ;)

I really LIKE that you are in a book club and meet as often as you do!; That's GREAT! :)

It's always wonderful to be able to locate folks with like interests, as it can also creat a more comfortable, as well as relaxing social atmosphere.

 

When I saw your name/topic post, I was really pleased that you sought out suggestions here. Once you are able to hone in to specific interests that have sat on a back burner, due to your work, I'm sure you will become less lonely and much happier.

As miocean had mentioned, our network of friends/family right here on ISN is a GREAT place to form friendships, first, due to our health issues. HOWEVER! I was really glad to see sticky post on your thread, mentioning his hobby love and what he's interested in...aquariums and his very interesting assortment of fish, which he has, which I'm sure offer him the calm and enjoyment, from BOTH spectrums!

 

Take care Kam and PLEASE know there is caring and concern all OVER our forum, so don't be a stranger here ;) Also! Our chats are still fully operational and Jo kindly lets all of us know what/when! ;) Most Tuesday evenings, there is a male member who attends most chats and I'm POSITIVE he would really enjoy your presence, any time you are able to chat with us!

 


Special Hugs,

Susie Kraft
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#10 Kamlesh

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Posted 22 November 2013 - 03:59 PM

Shelley and Susie,

Sincerely appreciate your friendship and several very good suggestions. I am on long term disability for about three months and still struggling to get used to it.

 

I am glad I do not have to worry about getting up early, but still I do as I like to watch financial market opening which is 6:30 PST. I am trying to develop a few hobbies, really would love to learn to play some musical instrument. I read books mainly on spiritual themes such as non duality, Tao Te Ching, etc.

 

I try to go for short walks and CA weather is sunny most of the time.

I will again be active in Sclero. I will also join chats.

 

Thanks


Kind regards,

Kamlesh


#11 Shelley Ensz

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Posted 26 November 2013 - 07:56 PM

Hi Kamlesh,

 

Staying in the habit of waking up at the same time every day is fabulous for your sleep (and thus your overall health). 

 

What kind of musical instrument are you interested in?  Do you want one that is easy to master, intermediate difficulty, or very hard to learn?  Do you want a stringed instrument or a horn?  Do you see yourself playing something whimsical like a banjo or more serious like a violin? Do you want one that you can learn yourself, or that you will need to take lessons for?  Do you want to play solo or as part of a band? Would that be a small band, or a large orchestra? Rock and roll, country, jazz or classical?

 

It's fantastic that you will be more active in the forums and chats again!  You have many friends here and we will all encourage you to make the very best of your new adventures in life.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.





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