Your next painless day

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Your next painless day

Post  Senna on Tue Apr 06, 2010 2:57 pm

Never knowing which day is going to be your good day, do you have any idea how you want to spend your next pain free day, when it comes?

Do you ever plan what you will do?

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Re: Your next painless day

Post  HeelerLady on Tue Apr 06, 2010 3:09 pm

That's a good question. A pain-free day...well I'd be hoping for more than 1 in a row but it would be spending time with people I've been neglecting. This is one of those things I just haven't been able to do so well. Cancelled so many plans because it wasn't a good day. I'd also be doing something outdoors - this is one of those things that can be hard being light sensitive.

I'm still waiting - been 9 months but I would love a 24 hour period with no pain. I'll even take a pain level 2. Smile
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Re: Your next painless day

Post  Senna on Tue Apr 06, 2010 3:21 pm

I am so very sorry that it has been that long for you. I do hope you will get your break some day, soon.
I will never forget my first pain-free day after years of similar daily migraine; I was absolutely hysterical with relief and joy. I was still in hospital (getting DHE45treatment) at the time and I was on such a high for days, it was like being re-born.
Since that day I have had many painless days and periods, but often I waste them, as I am never quite prepared, because I am never expecting them and later I am cross with myself.
I wonder if this happens to others, too.
I hope with all my heart that you will get your break one day, soon and that things will change for you.

Senna

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Re: Your next painless day

Post  alli on Wed Apr 07, 2010 10:27 am

I try to get one more part of my apartment cleaned out and straightened up. Housework is the one thing that take me forever to get done! I have stuff from both my kids cuttering up closets and cupboards and getting that out so that my aprtment is easier to take care of has been my project for the last year.

I get one little part done at a time when I feel up to it. Between the migraines, fibro and TN, that is a much harder than it seems. When I get home from work all I want to do is sleep, so a good day is used to make my life cleaner! I got my patio done last weekend and I feel so good when I look out the door!
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Re: Your next painless day

Post  Billy Ray on Wed Apr 07, 2010 11:41 am

For me it is always the same. I feel AWESOME! Then try to do everything and over do it. Which triggers a bad one. So I now try and I say try to go easy. But then I worry because when will the pain return? So it is hard to enjoy it. But really this is not a big problem because my painfree days per year can be counted on one hand. I even now can not remember when the last was. I do have some 3-4 days. Very few but they are good because I hurt just enough to not overdo it and I feel good enough to be called almost painfree. My everyday pain is 5 to 6. When it is in a bad cycle 7to9 for maybe a week at a time.

My dream is on a painfree day -- do lot's of things and play with my little girls. Spend time talking with my 89 year old mother. Play the piano and try to write new songs. Maybe practice for a few months and get back in a band.Doing fun things with Liliana. Working in the yard or in my tool shed. I also pray alot. I really know in my heart it is good to pray. I guess I am praying for the day my pain melts away forever ............
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Re: Your next painless day

Post  Senna on Wed Apr 07, 2010 2:16 pm

Yes, it is difficult to know what to do for the best - the instinct is to do too much, as it is easy to feel guilty about all the things we neglect to do, because we cannot - I can relate to this, Billy. I am sorry your pain levels are so horrific all the time, specialy when you have a young family and other family responsibilities. I think that having some idea in advance about something that we want/need to do when the better day comes, saves us a lot of indecission when it happens.

However, the art is never to feel guilty is we change our mind on the day and do something else.

I have more problems with my Fibro (which causes great muscular weakness and pain) then with migraine these days, but I have began to think in advance what I really need to do when I have a better day, like Alli. IT saves me lot of indecision on the day.

Sometimes, I just tell myself that I will do absolutely nothing and luxuriate in feeling "normal", just to enjoy the feeling , then I do whatever I feel like - no work. At other times I need to do important neglected tasks. Like now. I am expecting some visitors soon, and want to make guest room really nice, so I do a little at the time. But I had bad day today, so I did very little and slept a lot. Much do a little more tomorrow.

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Re: Your next painless day

Post  pen on Wed Apr 07, 2010 3:22 pm

Havent had a day without pain for at least 10 years.
Used to get days with less pain, but they are infrequent.
If I did would get as far away from this house as I could, preferable into the country and hopefully with my grand kids.

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Re: Your next painless day

Post  Johnfd on Thu Apr 08, 2010 3:02 pm

Like many others here I've had daily pain for years and this is steadily getting worse. But the pain does vary from the excruciatingly bad where I can't move to the manageable where I can get by. I don't have many pain free days but I'm lucky as I do have them even though they are not many. 3 so far this year.

Such days are difficult to plan for cos you don't know when they'll come. Trouble is that the same things usually have to be done as on a bad day! Given the chance, I would like to be selfish and to treat all good days as "me time", though.

There are other times, just minutes perhaps, when I realise "OMG its all gone!" These are times I savour. I stop what I'm doing to take notice. Of course it's not all gone. I've still got some tinitus and perhaps a twitch in the face but it's as good as gone.

This is why I was sat on the front doorstep of my house for 40 minutes the other day. I have had a horrible 2 weeks but in amongst it all there were those 40 minutes. I had gone outside just to do a few laps of the garden when, out of the blue, there was this good long spell. It makes no ruddy sense.
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Re: Your next painless day

Post  Almostangela on Thu Apr 08, 2010 3:17 pm

I do what I normally do but with more vigour. The music gets louder, the food spicier, the walks longer and the smile brighter.

Angela
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Re: Your next painless day

Post  Senna on Thu Apr 08, 2010 3:36 pm

Yes, it makes perfect sense John, these 40 minutes is a precious present you gave yourself, such acts make life of pain, more bearable.
I am sorry you suffer so much, I hope that one day you will find your solution and improvemnt in your condition. I found mine, when I have lost all hope, and althought not clear of migraine I have so many more good days then I ever dreamt possible. No miracle solution, just trial and error, but please do not give up trying and looking for new options.

I do not know your history, but have you see anyone in Hospital for Neurology in Queen Square in London? They have some excellent migraine specialists. Keep trying John. Never loose hope.

Angela, you are right of course life tastes better without pain, but it also makes me appreciate every single simple apsect of it much more even if at times I just waste such days and then regret that I did not use the time better.
Senna

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Re: Your next painless day

Post  moominamy on Sun Apr 11, 2010 4:55 pm

Can't actually imagine a day without pain! But I love Angela's answer.

I think I'd go dancing again. I used to love jive type dancing but the flinging around and male led aspect of it made it impossible (so unpredictable for me to keep my head relatively still).

And I'd make the most of the day by spoiling my husband rotton with everything he likes to do to, all his favourite food etc to say thank you for looking after me and be able to properly show my appreciation I love you (do try and do this anyway, but then I'd be able to do it without any pain distraction)

Amy

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Re: Your next painless day

Post  Senna on Mon Apr 12, 2010 9:55 am

I am so sorry that you have no relief from pain, Amy.
Such simple things, such normal pleasures missed - we live in a strange world od constant self-denial.
I do have quite a few migraine free days but my problem these days is muscualr pain and weakness.

Mostly, like you Amy, I miss dancing: wild, noisy, all night, non-stop dancing. When I watch people dancing on TV I dance with them in my mind. I just love it, love it.

However I am planning something in the near future - I am going to a wedding at the end of May and I have made up my mind, that I will dance that night away.
Although I am petrified of s/e, but just for this occasion I will allow myself a short course of prendisone, which always helps a lot with the pain and weakness and I hope this will make lots of dancing possible - I only take it very rarely so I hope it will be all right on the day.

Pleasing my dearest family by cooking for them huge feasts is something I cannot do any more, either. Now they cook for me, which is rather nice, but I do miss spoiling them in a big, big way.
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