Wish I could retire

For everything and anything else not covered in the other RLS/WED sections.
leggo_my_legs
Posts: 272
Joined: Sun Oct 16, 2016 12:29 am

Wish I could retire

Postby leggo_my_legs » Tue Jun 06, 2017 4:43 am

I've had poor quality sleep for about 2 months or so, and good quality sleep for only about 2 months before that, and then more poor quality sleep for years prior. Doctor's appointment is finally coming up this Wednesday. Going to ask for methadone, which she has discussed with me before as an option. Hopefully she hasn't changed her mind. I've developed tolerance to the norco and I had trouble tolerating the DA's...

I find myself wishing I could retire or go on long term disability. I am only 45 so I have a long way to go for retirement and also not prepared financially so I can't do it anytime soon. Just really struggling to drag myself through the day every day. Physical pain and burnout are also components.

What I have is this kind of insidious "low level" disability that stops being "low level" due to the cumulative effect of it, if that makes any kind of sense. I can hold down a job, but only because I can work from home sometimes and am generally able to get my work done in about 30-35 hours a week. My job is based in the field, and that makes it easier to pretend I'm ok, as nobody sees me all day every day. Thank god for that! I can put on an act for short periods of time with a break inbetween while I'm driving.

I doubt I could get long term disability and even if I could, it wouldn't be a good move financially for me.

Probably if I can start getting some reasonable, refreshing sleep, I will feel much better and have some emotional stamina, which really seems to be a big part of it too. It's both the physical and emotional aspects. It's a one-two punch that is just too much.

One thing that kind of bums me out from my PMLS illness is that I seem to have become very drug-positive. Norco? Kratom? Medical marijuana? Bring it!!! I guess it's a healthy desire, to the extent that I am desperate to find a solution for a restful sleep and decent quality of life. I feel like a walking, talking pharmacy sometimes, and it kind of bums me out. I never used to be like that, and it's a little bit of an identity loss which makes me sad. Not a huge deal, but worth mentioning to get it off my chest. I haven't actually tried the kratom or mm yet, but I was just kind of mentioning it as a point in regards to how my views have changed.

Polar Bear
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Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Wish I could retire

Postby Polar Bear » Tue Jun 06, 2017 1:11 pm

leggo_my_legs - When I retired it was the best feeling ever - once I got used to the idea.

It was not planned. I was within 2 weeks of receiving my government pension so there was some income. My hopes had been to work perhaps 2 days each week. Within a couple of weeks of retirement I was perfectly content to be not employed, although had much less income.

My working life had been operating on about 3 or 4 hours fractured sleep each night, I worked in a mental fog. Found myself having to double check everything and just couldn't take in new learning without going over it time and time again.

Your phrase 'low level disability' is a very clear description and I understand it completely.
Although I am retired it is still hard work to find the energy to tackle everyday matters although I'm not just as foggy.

Next week we have our son and daughter in law, plus two children coming to visit. So happy to see them but feel a bit overwhelmed, what shopping shall I get it ...... prepare a lasagne and a cottage pie for the freezer. A pot of soup, nice breads. Make sure the fridge is crammed full !!
Get the beds changed, sort space for the travel cot etc. etc. There was a time that none of this would have caused me a thought.

And yes, I also feel like a talking walking pharmacy.... and get very impatient with folks who try to tell me that tonic water would work wonders for me.
Restful sleep seems such an unattainable goal for me and has been so for about 30 years.

I do hope that your appointment on Wednesday is positive.
I feel for you, always working with a low level disability, and knowing that you cannot think of not working for a long time.
Most of us have learned to 'act the part of normal'.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

stjohnh
Posts: 324
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Wish I could retire

Postby stjohnh » Tue Jun 06, 2017 3:40 pm

I retired 7 years ago. RLS didn't interfere with my work, but has since worsened. I've tried a bunch of drugs in varying combinations and about a year ago hit on the current combination I take. Pramipexole 0.125 mg, THC as edible marijuana 15 mg, Kratom 700 mg, and Gabapentin 50 mg at 7:30 in the evening. At 11 p.m. I take an additional 350 mg Kratom, 5 mg THC and 50 mg Gabapentin. This has worked fairly well, I got what appears to be a good night's sleep, however do not awake rested. I feel tired and rundown during the day starting about noon. Not a great situation but tolerable. At any rate to several people on this board also have had positive responses to medical marijuana and kratom.
Blessings,
Holland

legsbestill
Posts: 349
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Wish I could retire

Postby legsbestill » Wed Jun 07, 2017 2:35 pm

Hi Leggo, I am supposed to be starting back to work in October and am very anxious about how I will cope - your description of how you feel is exactly how I imagine it is going to be. Oh dear!

As to being 'drug positive', I can sadly also relate to the feeling of despondency that that induces. I was never particularly interested in drugs (either medicinal or recreational) until I spiralled off mirapexin last year. Now I am almost an expert on opioids, dopamine agonists, mmj and kratom - not to mention the myriad otc supplements and diets that one sees recommended. Hate the fact that I always feel like clarifying that the only reason I am interested/knowledgeable is because of RLS.

legsbestill
Posts: 349
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Wish I could retire

Postby legsbestill » Wed Jun 07, 2017 2:39 pm

Polar Bear,
Your preparations for your son and his family sound amazing. Can I come and visit too?

Seriously, I would imagine they will be delighted just to be with you and happier if you are not too worn out preparing for their visits. I have a similar tendency to prepare very fully for visitors and these days, just as you describe, it is harder to cope with that. What I have noticed over the years is that no matter how fully I prepare, there is always something that I manage to forget/fail to provide for and everything is ok anyway. I hope you enjoy the visit.

Polar Bear
Moderator
Posts: 6885
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Wish I could retire

Postby Polar Bear » Wed Jun 07, 2017 6:58 pm

legs - indeed I am inclined to 'over prepare', but I'm almost there.
All is sitting ready for my husband to make up the beds. Once we move some furniture.
I like to be ahead of myself especially as tomorrow 8th, I am working 6am - 10.30pm in a polling station during our General Election, and plans have already been made for Friday through to Monday !! They arrive on Tuesday.
Anything not done won't matter.
And actually, they don't want us to go to any bother.
You are correct in that everything is always ok anyway :D
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
Moderator
Posts: 14889
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Wish I could retire

Postby ViewsAskew » Thu Jun 08, 2017 3:42 am

Polar Bear wrote: I am working 6am - 10.30pm in a polling station during our General Election,


Just wanted to thank you for participating in your voting process.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

leggo_my_legs
Posts: 272
Joined: Sun Oct 16, 2016 12:29 am

Re: Wish I could retire

Postby leggo_my_legs » Thu Jun 08, 2017 3:54 am

Thanks for the replies. A little overwhelmed right now for some reason. Just thanks for understanding.

Polar Bear, happy for your retirement! Hope the visit goes well. I understand, even functioning in retirement no walk in the park either. This damn illness! I appreciate your reminder to act the part of normal. I used to be better at that than I am now.

Holland, it amazes me how people find those incredibly detailed medication regimens! I am in awe. Glad it's at least tolerable.

Legs, I hope your return to work goes better than you think. I wouldn't be surprised if a lot of what you're feeling is anticipatory anxiety. It might not be as bad as you think. I've been out for an extended period of time before. It took me awhile to get my stamina back (this was before the PMLS drama) but eventually I got back into the swing of things.

Also, re: "Hate the fact that I always feel like clarifying that the only reason I am interested/knowledgeable is because of RLS." Yes, that's exactly how I feel too.

I just took my first dose of methadone tonight. I took half of a 5 mg pill to see how it affects me. I was excited and scared earlier, now I just kinda feel numb and dull so maybe it's already starting to work and put me to sleep or something. Numb and dull doesn't sound too bad right now, as long as I sleep well!

Doctor brought up MMJ but I said no due to working in healthcare field and specter of pre-employment hair drug testing where it shows up for a long time. If methadone doesn't work, I might change my mind though.


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