What to do after having to go on disability...wife seeking help for hubby
Hey y'all.
I've been here before talking about my husband, Tracy, and his journey. Up until last weeks appointment with the doctor he was feeling hopeful about returning to work at some point. He had really been hoping that his second botox shot (last week) would have helped and he could return to work in September. Nope. No Way. Can't do it. The doctor told him that if the botox doesn't work by the 6 week mark that he would call in a new preventative med. But the next appointment wouldn't be for another 3 months which puts Tracy into Long-term Disability.
Tracy is a real genius (not just saying that). His passion since the time he was 13 years old was programming computers. His hobbies are woodworking and his 3D printers. He also loves to read fantasy/sci-fi books. The migrane has robbed him of his job (computer programming). It has robbed him of using his imagination so he can't read (though he did read 1 chapter the other day...the first time he has read in a year. It ended with a migraine). The other day he realized that he can't even work on his 3D printers without assistance (and I don't do 3D printers..that kind of thing is not in my wheelhouse). And woodworking? That is a big huge NO....too dangerous and the noise and imagination would take him out. He also can't exercise because it brings on migraine. Every once in a while we can take a short walk, or maybe if he is feeling really great we can walk a slow mile...but that is very few and far between.
So my question is, what the heck do y'all do for fun and recreation when all of your things seem to have been taken away?
The other day he went into the office for just a few minutes to welcome a new employee/friend that he had hired MONTHS ago and just started. Tracy wanted to see his friends (Not work). So we went into the office. He was there 15 minutes and a migraine hit hard. So he can't even see his friends. He is feeling very isolated.
We have been able to reconnect with a friend who actually comes over to give me some respite, and when my mom went into the hosptial last week, she came over to stay and take care of Tracy since he is unable to really care for himself.
So the question remains, what do you do for fun? Do you all have any ideas that are safe? He is so tired of being at home. He is tired of sitting around all day and doing nothing. And he doesn't believe he will ever be able to go back to work. He is only 53 an has a whole life ahead of him. I'm doing my best to support him, but even I am getting tired of being in the house with him all day. It's taking its toll on both of us.
Thanks for reading. I know it was all over the place. I'm just kinda at my witts end and need help helping my husband.
Thank you for sharing you and your husbands journey with us. I understand how frustrating it is when migraine impact our entire life. Let me share some of my thoughts.
Botox - it can take three even four rounds of Botox before we see real improvement in migraine frequency and severity, it did for me. Botox works to prevent migraine, it's not a cure. Migraine is a neurological disease that can impact our entire body. I wouldn't give up yet if he's had just two rounds.
Is the doctor your husband sees a general neurologist? Here's the thing - general neurologists may be fine doctors but have a hard time being experts in one area because they treat many conditions such as stroke, epilepsy, multiple sclerosis, Parkinson's and more. A true migraine/headache disease doctor treats migraine and headache all day, every day and is board certified in headache medicine which is different than being certified in neurology. Here is more information on how these doctors are different and how to find one;
https://migraine.com/blog/really-find-headache-specialist
https://migraine.com/living-migraine/change-thoughts-new-care
https://headaches.org/resources/healthcare-provider-finder.
From you name is it safe to assume you are in Idaho? These are doctors who are board certified in headache medicine in your state; https://www.ucns.org/Online/Online/Diplomate_Directory.aspx?hkey=f8f00552-f924-4ef6-a9bb-6023b1cd341b. I would encourage you to reach out to one or two of these expert doctors, they can have a huge impact in our care.
It can take time to adjust to our new normal when living with migraine. I wish I had some magic words of wisdom for you, but each of us deal with this disease so differently. I do have some resources for things to do here; https://migraine.com/navigate-pain-tips
https://migraine.com/video/interview-advocate-lisa-benson
https://migraine.com/living-migraine/good-bad-choices.
Has your husband tried an audio book at a low volume seeing as reading is an issue? I love them!
Caregivers need support too! It's not easy caring for someone with chronic illness. Here is just one resource we have; https://migraine.com/living-with-migraine/caring-for-a-migraine-sufferer. Chronic Migraine Awareness, Inc. also has a FB support group and a virtual support group that meets every week if you're interested; https://chronicmigraineawareness.org/care-partners.
I've given you a lot so I'll stop for now!! Please let me know what you think and I wish you and your husband a wonderful day, Nancy Harris Bonk, Patient Leader/Moderator Migraine.com Team
Sounds good. Glad the information provided you with is helpful. Once you've had a chance to look things over, please feel free to let us know what other questions you may have. We are here to provide information and support anytime. Warmly- Holly -migraine.com team.
You're very welcome! Good to hear your husband is in good hands and close by!
I look forward to your updates! Nancy Harris Bonk, Patient Leader/Moderator Migraine.com Team
It is so hard when it seems everything is taken away!
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I’m 44. I developed migraine with headache at age 38, but have been on permanent disability since 2008 for other health conditions.
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I’ve lost the ability to do many things over the years. Other things I’ve found adaptive ways to do them.
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And, new things came into my life to enjoy.
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Give it time and experiment and you two will find things also.
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I know it sounds cliché, but mindset does make a difference. I once found gardening on a large scale to be great fun. Now I find visiting a botanical garden to be just as fun. I’m still a plant lover.
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I once enjoyed writing, but arthritis makes it too difficult. I now enjoy phone photography as a creative outlet. I’m still an artist.
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Migraine means I skip festivals, concerts, and movie theaters. Instead, I visit towns on the slow days. Listen to music and movies at home.
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Very simple things have become great sources of fun. Seeing a new bird in the yard. Laughing at a friend’s joke. Playing cards with my spouse.
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There are days migraine keeps me even from those.
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So while migraine has really limited my life, it has taught me to enjoy quiet simple living.
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This probably differs from the answer you hope for, but it’s my experience. I’ve just learned to find “boring” things to be fun things.
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I also accept the migraine that may come and do something I really want to do. I rest as much as possible in advance, make sure I’m as well as can be going in (nutrition hydration etc), take the medications that I can, and plan to treat the migraine flare as soon as possible.
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Ex: I’m planning to go to the Van Gogh Experience. A whirl of moving colors and lights? Yes. I am going to get a bad migraine. I may have to leave the venue early. But I am going anyway. Because I love art.
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Again, I hope the best for you both. HugsThank you for your reply. We went to the Van Gogh experience in January. We flew to Seattle for it. Tracy stayed in the hotel as much as possible resting until the exhibit. He was able to do the exhibit and we found the quietest restaurant in Seattle afterwards. He had a great time, and paid for it for 3 days later. But we took all the precautions so he could enjoy the event. I hope you have a great time at the exhibit; it truly is moving! I used to be an art teacher and my daughter is an artist. Van Gogh is our favorite. Ya.. so go and have fun.
Tracy has his good days where he can do some fun things. right now he is playing a computer game with his best friend. I'm not sure how in the heck he is managing but he is.
Thank you for your hopeful reply. I apprecaite it.and Just wanted to dip into your exchange to express my gratitude for the warmth, compassion and exchange of ideas you are sharing and offering one another. This is exactly the goal of our site and it's beautiful to see it realized when two people with migraine connect, relate and support each other in such a kind and moving way. You are paving an inspiring and heartwarming path for others who may be reading along to follow - providing a great example of how it's possible to reach out and be heard. Lovely. With gratitude, Holly (migraine.com team). I’m so glad to hear there are good moments for Tracy. And you’ve given me some hope for Van Gogh. Computer games definitely count as fun! Complex or simple, whatever we can manage to do, we find the fun in it somehow. (:
Hugs
I'm probably not the best person to answer this but I'll try.
I have had migraine headaches since the age of 10 I'm 46 now. Went on disability knowing I would never work again about 8 years ago. It's definitely been a hard battle with trying to stay busy and feel like I'm still a valuable part of my family.
Having friends and family that truly understand what is going on is key. With that said it is still hard on me/anyone that deals with these because in my own experience I can't really commit to doing things I used to do. Committing to events, work, visits or anything can be hard because if you end up with a migraine you have to cancel. Canceling on plans all the time can make it so you don't want to commit or even get invited to do things.
Make sure you're husband continues to do his hobbies or finds new hobbies that will help with stress and mood. I work on cars and draw for my stress relief. Working on cars is an expensive hobby though especially if it's your own car. I try to help others with theirs and those friends I've made from that hobby try to take me to events just to make sure I'm still doing something I like.
With that said I'll still admit it an uphill battle with depression. Hopefully he will never have to go through that but if he does just be supportive which it sounds like you are doing that and more.
Best of luck. Hopefully he gets some relief down the road from some kinda treatment and can return to work. Or at least finds a hobby that keeps him busy and helps him.
Thanks for joining the conversation @Badmutt. I think you were the perfect person to answer. -Warmly, Donna (team member)
Thank you for your reply. And you were a great person to respond. All responses are appreciated as I try to support Tracy on this migraine journey.
He is doing his best to keep up with his hobbies. We even purchased a 3rd 3D printer so he has one that is a relic and used for decoration, one that is used for tinkering on and one that is used for actual printing. He also has some electronic projects he wants to do. The issue has been that the migraine is preventing him from even doing these simple things.
He can't do anything that requires his imagination...so no reading, audio books, drawing. IF anything requires him to use his brain to think, it ends up in serious migraine. So all of his hobbies need to be easy and "no brainers". But my husband says the bar gets lower and lower every day. It's scary.
Thanks to another post somewhere else about accessibility tools, my husband and I will be taking American Sign Language classes together. He has decided that its time he learns because the migraines are affecting his speech more and more and he is unable to communicate. He is hoping that the sign language will allow him to communicate when he can't speak. This will be fun to learn together, providing the migraine will let him.
Anyway..thanks for responding. I appreciate you.
Martha
