What Relationships?

Share how living with this disease can and does impact your relationships. How do you cope? What questions to you have?
debbluebird
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Re: What Relationships?

Postby debbluebird » Mon Oct 16, 2017 8:46 am

Polar Bear wrote:Parts of my limbs are certainly demonic !!

Last night my dh couldn't sleep well because of a sore shoulder which has been lingering for several days.
I have raging cold symptoms since yesterday, stuffed up nose, headache, and am surrounded by nasal sprays, balm tissues (although I find an old towel is easiest on the nose and can then go into the boil wash) etc etc. We were passing each other like zombie.


If his shoulder stays bad, he might have torn something, for it to hurt that much. Should have it checked if it doesn't let up.
We are the same way most of the time, passing each other like zombies.

Polar Bear
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Re: What Relationships?

Postby Polar Bear » Mon Oct 16, 2017 10:35 am

deb - getting him to the doctor is nigh near impossible.

Yesterday his plan for today was to start building a wooden box out of old pallets. This box will hold a concrete plinth which in turn will hold a concrete bowl containing a solar water feature - it's just a bubbling of water a few inches high, or alternatively a small fountain of about 9 inches high, with greenery planted around the bottom in the wooden box. The concrete plinth will be screwed to the bottom of the wooden box and the plinth will be secured to the bowl. The idea is to make the concrete plinth more stable so that grandchildren cannot knock it over thus damaging it, or themselves. He also plans on putting 6 castors/small wheels on the bottom of the box so that it can be wheeled around the patio if we want to move it into the sunshine, it being solar.

My plan is that I have a nice planted-up pot so that if there is no sunshine (very common here in N. Ireland) then the water feature can be lifted out of the bowl and instead set in the planted pot.

I've told him to leave it, give his shoulder some peace !!! it will be interesting to see what he does. As of last night he still intended to start it today.

All this as a result of me buying a $20 solar mini fountain to set in to my ancient bird bath - but I love it as it was my dad's from 40 years ago.

Also of course ...... today ex hurricane Ophelia is due to hit us in the next hour.
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
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Re: What Relationships?

Postby ViewsAskew » Mon Oct 16, 2017 3:19 pm

Has Ophelia hit????? Let us know that you are OK :-).
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.

debbluebird
Posts: 2040
Joined: Mon May 21, 2012 3:27 pm

Re: What Relationships?

Postby debbluebird » Mon Oct 16, 2017 5:06 pm

Oh wow. Hope it doesn't hit too hard.
Sounds like a big project and will be nice when finished.
If there is something torn in his shoulder, it will not heal on it's own, just get worse. If nothing torn, then it could heal.

EeFall
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Joined: Thu Jan 03, 2013 4:11 am
Location: USA

Re: What Relationships?

Postby EeFall » Mon Oct 16, 2017 6:29 pm

Polar Bear wrote:Parts of my limbs are certainly demonic !!

Last night my dh couldn't sleep well because of a sore shoulder which has been lingering for several days.
I have raging cold symptoms since yesterday, stuffed up nose, headache, and am surrounded by nasal sprays, balm tissues (although I find an old towel is easiest on the nose and can then go into the boil wash) etc etc. We were passing each other like zombies.

Ibuprofen didn't help him nor did topical creams so I offered him a couple of Cocodamol It's a testament to how sore his shoulder is and that they have helped him, that he has taken them 3 times, and will have another two prior to bed tonight. He doesn't normally do 'pills'.
However....... I don't have a stash of cocodamol and each time he has a dose that's less for me at the end of the month !!
Much more and I shall have to tell him to see his own Dr.
It's unbelievable how possessive and grabby i feel about 'my' medicine.


Hope you and yours are better. I share my OxyContin with my wife sometimes but she really is opposite of me and can’t take meds. A 1/2 tab of oxy and she will sleep for.hours.

EeFall
Posts: 1493
Joined: Thu Jan 03, 2013 4:11 am
Location: USA

Re: What Relationships?

Postby EeFall » Mon Oct 16, 2017 6:35 pm

Polar Bear wrote:deb - getting him to the doctor is nigh near impossible.

Yesterday his plan for today was to start building a wooden box out of old pallets. This box will hold a concrete plinth which in turn will hold a concrete bowl containing a solar water feature - it's just a bubbling of water a few inches high, or alternatively a small fountain of about 9 inches high, with greenery planted around the bottom in the wooden box. The concrete plinth will be screwed to the bottom of the wooden box and the plinth will be secured to the bowl. The idea is to make the concrete plinth more stable so that grandchildren cannot knock it over thus damaging it, or themselves. He also plans on putting 6 castors/small wheels on the bottom of the box so that it can be wheeled around the patio if we want to move it into the sunshine, it being solar.

My plan is that I have a nice planted-up pot so that if there is no sunshine (very common here in N. Ireland) then the water feature can be lifted out of the bowl and instead set in the planted pot.

I've told him to leave it, give his shoulder some peace !!! it will be interesting to see what he does. As of last night he still intended to start it today.

All this as a result of me buying a $20 solar mini fountain to set in to my ancient bird bath - but I love it as it was my dad's from 40 years ago.

Also of course ...... today ex hurricane Ophelia is due to hit us in the next hour.


Fountain sounds cool! I made one this summer and has a solar water pump but we have been waiting for grandkids, a cat or raccoon to knock it over and bowl is glass crystal sitting on a tall metal plant stand. Actually I will probably take it down in a few days as it is going to freeze here soon.

EeFall
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Location: USA

Re: What Relationships?

Postby EeFall » Mon Oct 16, 2017 6:39 pm

ViewsAskew wrote:Has Ophelia hit????? Let us know that you are OK :-).


I heard that on news yesterday and was not aware that Ireland and Scotland even had hurricanes.

Polar Bear
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Re: What Relationships?

Postby Polar Bear » Mon Oct 16, 2017 6:49 pm

Yes, dh's shoulder should heal ok. Today he is just using paracaetamol and not cocodamol, but didn't make any moves towards working with the pallets, thank goodness.

The centre of Storm Ophelia is just over N. Ireland now, 7.30 ish pm, and it's to be rough for a few hours. 50 years since there was anything like it. it has become Storm Ophelia as it weakened coming across the Atlantic. Nothing at all like what hit east coast USA. Most shops and businesses were closed from lunchtime today, all schools were closed today and again tomorrow. 3 people have died so far, 2 in car incidents and one guy who was using a circular saw to try to clear away a tree.

We are cosy and fine, the worst that will happen us is that we could lose power.
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

Polar Bear
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Re: What Relationships?

Postby Polar Bear » Mon Oct 16, 2017 6:52 pm

EeFall - Know the type of bowls you mean - I've seen some beautiful glass bowls on metal stands but practicality stepped in. They would have been (accidentally) subjected to footballs and all sorts in our garden.
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

restlessknight
Posts: 5
Joined: Sat Dec 22, 2018 8:48 am

Struggling with relationships?

Postby restlessknight » Sat Dec 29, 2018 11:52 am

Wow! It's very late and I had the opportunity to read many of your experiences with relationships. Thank you for sharing. I've been married to a wonderful woman for 28 years. I have three sons who are all fine young men. I was diagnosed with severe RLS 14 years ago. It worsened and I also have severe PLMS. I've gone through all the standard treatments and and now facing methadone as a last line of defense.

I usually go without sleep at least 2 days a week, often consecutively. Most days I get a few hours of sleep, which are always fitful. My condition worsened, and the reality set in that no one knew how hard it was to mange my irritability. Anger, frustration and loneliness are a constant companion.
My wife believes she understands and is remarkably supportive. Ironically, this can make me more frustrated. Many times I thought my family would be better served if I separated from them. Those of us with this affliction know how it drives us to places we don't want to be. The struggle to maintain a "normal" life is an almost unbearable burden. I see how others feel when they simply want to isolate themselves. Social interactions can be terrifying. I say things that may be inappropriate or simply nonsensical. Isolation solves many problems but creates equally terrifying consequences. It seems there is no way to win.

My heart genuinely aches for those who suffer. There is a coping strategy that has helped. I simply refuse to become a victim. I'm not saying it works all the time, but it works. Most of us would give anything for those we love. To focus my attention on myself leads me to despair. I look at this disease as an enemy of those I care for. Every day I survive and keep this enemy at bay is a victory. I draw my strength and confidence from my disease rather than let it rob me of the same. If my problems spread to those I love, then RLS wins. I make it personal. I may feel terrible, but they won't know. Depression and anger may be the cards I've been dealt, but I won't pass those cards on. I don't always win but at least I have the dignity to fight. Those that care for me deserve the best of me.

If you are isolated and alone, I feel for you. No matter who you are or what your dealing with you can crawl back out into the light. You deserve it. See your disease as an enemy to be fought with confidence and faith. There is someone who needs you, even if you haven't met them yet. It takes time to regain you power but you will. I'm not a remarkable person. If I can do it, anyone can. You are not alone, ever. Many of us feel just as low. Take comfort knowing that all over the world there are others who understand. You may not be able to share your plight with with family or friends, they just can't understand. But,perhaps view yourself as a soldier. You are fighting for a life you deserve against a mighty foe. You may not be able to see your fellow troops, but we are here. We understand. Try not to be a victim. If you have a bad day, start again the next day. Life gives us what we ask for. We just need to create a place for it to happen. Create a place for your own victory. Be a quite hero for those you love.

Thanks again for sharing your stories. It helps me remember I'm not alone.

stjohnh
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Location: Palo Alto, California

Re: Struggling with relationships?

Postby stjohnh » Sat Dec 29, 2018 2:50 pm

restlessknight wrote:My heart genuinely aches for those who suffer. There is a coping strategy that has helped. I simply refuse to become a victim. I'm not saying it works all the time, but it works. ...
See your disease as an enemy to be fought with confidence and faith...

I'm not a remarkable person...


Wow... Well, welcome to the RLS community. I disagree, I think you are a remarkable person. I think what you wrote, in your very first post to this forum, is the most upbeat, positive and caring introduction I've read anywhere. Kudos.

One question, have you had intravenous iron?
Blessings,
Holland

Polar Bear
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Re: What Relationships?

Postby Polar Bear » Sat Dec 29, 2018 3:42 pm

restlessknight - you have just about taken my breath away.
I do hope you find this site useful and informative, and indeed welcoming and friendly. :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

restlessknight
Posts: 5
Joined: Sat Dec 22, 2018 8:48 am

Re: What Relationships?

Postby restlessknight » Sun Dec 30, 2018 7:32 am

Thank you for your kindness. I have not tried iron treatments of any kind. My iron levels seem to be okay. I'm being treated by a fantastic Neurologist, Dr Gregory Carter, in Dallas Tx. He specializes in sleep disorders and his Bio is remarkable. I will address the iron treatment with him during our next visit.
Thank you again for the information and support. I will read-up on it the iron treatments tonight.

Stay strong!

stjohnh
Posts: 911
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: What Relationships?

Postby stjohnh » Sun Dec 30, 2018 9:40 am

Here is a link to the iron recommendations:

https://www.sciencedirect.com/science/article/pii/S1389945717315599?via%3Dihub

I would print a copy and take to your doctor. Highlight section 5.3.4.

"5.3.4. Expert-consensus clinical recommendations
Ferric carboxymaltose should be considered as one of the first-
line treatments in patients with RLS. IV iron treatment should not
be given to patients with serum ferritin levels >300 m g/l or trans-
ferrin saturation >45%."
Blessings,
Holland

badnights
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Re: What Relationships?

Postby badnights » Sun Jan 06, 2019 7:41 am

restlessknight, thank you so much for sharing your thoughts and your wonderful attitude. You made me cry :)

Remind your doctor that in WED/RLS, iron in the blood may be fine, while at the same time there is a deficiency of iron in the brain. There is no direct way to check for iron in the brain so the level of ferritin in the blood is used as a sort of inaccurate proxy. For WED/RLS patients, ferritin levels below 75 (some experts say anything below 100) are considered too low. For some of us, supplementing with iron makes the symptoms less severe.

Infusions are probably better than oral pills but it can be a hard battle to get one, depending on your doctor.

WED/RLS patients dump iron somehow, and can't keep good stores of it in our tissues, so when we take iron, it's generally forever - it;s not like people with iron-deficiency anemia who can take iron for a while til they're back in shape, then stop supplementing, because from then on they get what they need from food. If we stop, our iron stores typically go down.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.


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