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So blessed, but so weary


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Sometimes I feel like I feel "wrong" if that makes any sense.

I know I am so blessed that I did not die, that I don't have any more deficits than I do. But I am so tired of being in pain every moment of every day. I mean there is not one moment in a day that I do not have a headache. Some days are better than others where my head is only at a level 3 or 4. It hurts but if someone asks it isn't really so bad that it is front and center in my day.

Right now, though, 5 out of 7 days a week my headache is so bad that I can't focus. I still work full time as a teacher and love it. We talked about me going down to half time, but teaching doesn't make it worse. It would just add financial stress and the headaches are just bad or not bad regardless of what I do. I can sleep and that helps, but it's not healthy for me to do that. I can't be sedentary because a sedentary lifestyle is so unhealthy so I can't do it. Plus I'm a personal trainer, and while I do have a helper who takes over if my head is bad and I listen to my body, I have that small side business to run.

I feel like I should slow down, but I don't know how to because financially, I can't afford to. It is also very hard in the US to get disability for migraines. I do have long term disability insurance that would pay 70% of my income, but again it would be hard to get it.

I'm just so tired of the pain. I am considering seeking out a psychologist who deals with chronic pain issues. I worry that this will be the rest of my life and I just get nauseous thinking about it. I am such an up person by nature and thank God I am! I'm not sure I would have lasted this long otherwise. But I can say that now I am really starting to deal with some depression and I'm just so damned tired.

My neurologist who is a headache specialist says this isn't forever, but it's so hard to believe at this point.

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Hi Teechur,

I am now 10 months and I understand. I never feel quite right. I take Tylenol every day and just got the third occipital nerve block shot for pain that likes to spike through my left eye. I just cried the other night and told my husband I wish I could just feel good again. Seems so simple, but, what a challenge.

I, too, feel incredibly blessed but I miss feeling healthy. I know God is healing me in His time and I must be patient.

Still, I would love to be the heathy me again.

I have noticed as long as I am active I feel good, but, as soon as I settle in for the evening it all settles in on me. The dizziness and headache. Ugh.

You have a lot on your plate. I see you do love what you do. Maybe you may have to think about some "you time".

Headaches are miserable. Please take care of you.

I

Edited by iola
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Hi teecher

You have done so well but I wonder if you ever have times in the day when you are absolutely still and your brain is silent? . I'm not saying it's a solution to headaches but I know if I don't take a quiet moment each day, especially after I have been with lots of people, done work, then my headache will make its grip felt much more strongly.

If you don't mind me saying you don't seem to have given yourself much allowance for your bleed, it appears you have managed to regain so much of your former life at equal pace to prior SAH which is great but our brains are busy doing processing even when we sleep and maybe they need a little more attention than we gave them previously.

I know my brain just doesn't offer me the efficiency and capacity to do everything I did prior to my SAH , it uses energy quicker so I have to pace things if I want to feel balanced and have less pain. It's a trade off. Sometimes I do more but my head will always tell me when I do and you can't keep pushing through it, rest is what's needed. Boring I know, I hate inactivity , it doesn't sit well with me, but I hate constant pain more, so I sit a while.

I look at it like we have similarities to a vintage sports car. We can still look good, we have strong well engineered parts and awesome engine but it needs more investment than just getting in a 2014 production line model and turning the key, you have to coddle us a bit to get the same, maybe even superior performance.

Don't wish to patronise or offend at all as we are all different and you have to find what works for you, just sharing my take.. Be kind to yourself teecher.

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Teech,

I understand how you feel, me also !!

I had headache because family told me about problems, like a baby I blubber.

Gosh I feel like no help to anyone at present !!

Oh well thought I'd let you know you are not alone pal xx

Lets cheer ourselves up that also goes for Daffs and "I" xx

Love to us all

WinB143 xx xx

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Teech,

One of my SAH friends got disability. Maybe trying under SAH instead of migraines. The SAH preceded the migraines and maybe you could find a doctor that believes that it is causal. In that case, you'd have a very strong case especially if you can't function as before. You have a BRAIN injury for goodness sakes! You may, however, have to start showing outward signs of not functioning as before...I'm not sure.

I know I can't function as I did before without paying for it in some way or another. For you it is headaches for me it is crying uncontrollably like a kid and all over body aches/weakness. However, I don't have to work and have not applied for disability because my husband just takes care of the income.

I know if I were on my own, I'd for sure try and get disability. All you can do is try. Take a week off of work and do it. In the mean time, take more time without any distractions and delve into the pain...it seems to help for some reason for me.

Hope you have more low pain days ahead.

~Kris

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  • 2 weeks later...

Thanks everyone. My current neurologist completely believes it is related to the SAH so that's not a problem. I think I worry about those shows where they do the gotcha "This person is living on disability but look at him lift that tree off of his truck!" i.e. "She can't teach (spelled it teech the first time, ha) but she can run 50 miles! What's up with that?" It's thinking...thinking and having to make fast decisions coming at me all at once K I L L S me! I love it. Love my kids. They are my heart and soul during the day and are so VERY good to me.

On school breaks I have a single focus and it is so nice. I wake up, I go for a run, it's at my pace. I know we ALL wish we could do that, but the difference is when the head is bad I can control the rate at which I deal with things. I do still have bad days where I might have to spend the day in bed. Right now we have decided that I'm going to work next year and give the treatments another year, but I do have LTD insurance and we're continuing to investigate it. I'm out of sick leave as of the end of February so I'm going to attempt to limit days at home as much as possible.

On a good note, spring is here, the days are longer, I had my meds adjusted and woke up two weeks ago one day without a headache for the first time in over two years!!! That has made me so hopeful. It lasted for about 90 minutes and gave me some real hope. It hasn't happened since, in fact I had three full days in bed last week and it was awful but still...yay! :)

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