Rambling Thoughts

My attitude about this just sucks. I backed away from work as a temporary thing thinking that I could come back to it when the migraines calmed down. Hey, it is “just” migraines – I least that is what I was thinking – nothing life-threatening – something other people manage to deal with and still have full lives. So kind of put my outside life on hold for a while to give my body a break and then thought i could go back to work after things got better – cause it should be getting better – again – in my head – migraines are not supposed to be a debilitating medical condition.

It is not like I have MS or some other neurological disorder that has a medically certain downward path that would have been spelled out for me so I would kind of know what to expect. That is the problem, I think – that I do not know what to expect – I have these hopes but then they get trashed – no one can tell me how this is going to end so I try to keep pushing – to have a normal life and then I keep getting knocked back down. There is no timeline, no month-to-month or year-to-year timetable of what to expect. It is not like I want to have something like MS but do you understand that in my head it would be better if someone could give me that timetable and then maybe I wouldn’t be so hard on myself when I can’t go to work, can’t get out of the house etc...?

Hi,

I know exactly what you mean. If it were MS or anyother neurological disease- you would kind of know what to expect and others would too. Migraines are that odd neurological disorder- in that they run the gamut of things. One person can get them and stop them with Aspirin, Others, like us, get them and our lives are turned completely upside down- we try numerous medications and doctors to little or no avail. It is extremely frustrating. I wish I could give you a time table. I have been battling these things for thirteeen years now, and I am only thirty. The only thing that I can do is take it one day at a time. Right, now, I am scheduled for IV Depakan on Wednesday- which leaves at least five more days of horrendous pain, until the Iv can knock it down.

I wish I could tell you more. I can only offer my support.

Pain free days,
sailingm

I totally understand what you're saying JM,

Everything about you is chomping at the bit to live your life to the full. Sounds like you want to get in amongst it and live live live. And then there's your head that has not read the program. If you're anything like me there's a constant forgetting and renewed realisation of how much power your head seems to have over your life when it keeps you from your wonderful plans yet again. Because I don't have daily headache, I can completely get excited for new futures and then BAM, "Oh yeah. I can't do anything I plan. I forgot. Life sucks." From previous posts I recall that you set yourself this limitation because you felt you needed to. To step back from work. And you weren't sure how you would cope at home. Maybe you need to keep working on that side of things - what meaningful occupation can you fulfill at home so you won't go completely mad. I am not good at coping with the limitation of migraine - I don't think any of us are. The single most important and salient issue (apart from the pain!) for me is that it steals my very life away from me. And I resent that a lot. I have recently got some casual work through Uni to work from home online and that's really helping my self esteem.

I want to point out that I think with MS you would feel the same though. I know you were only using it as an example. But people have good days and bad days and still long for health and freedom - 'the medically certain downward path' of any disease can be written on a piece of paper - and it can be true - but that doesn't mean anyone would ever accept it in their heart. So, even with the diagnosis your day to day experience would be the same. What I mean is there is no chronic illness that comes with an acceptable timetable. If you're diagnosed with cancer, even terminal cancer, you fight the diagnosis so you ignore the timetable. I think we are made to want to be free to make our choices and do what we want when we want - within reason. And that's the hell of chronic illness. It's a limitation. A HUGE LIMITATION. And we have to somehow, people who are not designed to live within limits, learn to live within limits...crazy sauce.

I so appreciate the input and that I know that I can post my thoughts/feelings safely...........Been having quite a conversation with myself these past few days - had hopes that the physical therapy I had started would help and now pretty sure it is making things worse so to the point that I need to accept that at least for the foreseeable future these migraines are going to be with me on a daily basis. As I lay on the couch recovering from one maybe for me this is about finding out how to let go of the life I had and to give myself permission to be home - to create a new life. Before the migraines became daily on my days off I enjoyed being home - lots of projects, things to do etc.....I don't enjoy it now - I fight against it - not sure how I can learn to accept the impact these migraines are having on my life.

I had a doc once tell me that my migraines (which are mostly aura) are like having a stroke and recovering from one every day. I do not know when or for how long I am going to lose my ability to talk, to walk, to stay conscious, to think clearly, etc... It is hard to accept - especially this lack of control, the not knowing when it will hit - how can I be expected to accept this and that is maybe why I fight. When does this fighting phase end and when does the acceptance part begin? And I am pretty sure that I am just rambling - but thanks again for the responses..........helps to know I am not alone in how I feel.

I know EXACTLY how you feel! My migraines are mainly aura too. I worked part-time hours last Nov, Dec and Jan thinking I could manage to kick it that way. Nope. Had to take 2 months off work (Feb and March). I have never been to such a dark place in my life! I was depressed, full of anxiety about my job, questioning my life in all aspects.

I have a hard time accepting this is a daily occurence for me now especially after having migraines all my life which were only a few a year. I am tired of it all as well. Some days I say to myself, okay, this is my life now, I have to accept it. Other days I say WHY ME? Why can't I pop a pill like someone who has high cholesterol and everything is fine? Why is this such a frickin struggle? My life has been turned upside down! The last of my kids is graduating high school next month and this is supposed to be MY time to do the things I want to do - take courses, travel more, etc. Now I can't plan anything, go anywhere without wondering if I'm going to have a dizzy spell, or another one of my famous auras that puts me down for the day. I still can't work full-time!

The worst part is friends, family and co-workers not understanding - they think because I look normal on the outside that I'm fine on the inside. Well, I'm NOT! I don't voice how I feel anymore because I'm sick of saying the same thing over and over again as I'm sure they are sick of hearing it. I truly truly feel everything you are going through. I keep telling myself I'm NOT going to die, it's not terminal but sometimes I tell ya it's hard to keep up this reassurance.

Hi All,

It is really hard when you appear "normal" and yet, you know you can be sidelined by something you can't see or explain. I mean, you can tell others you have a migraine, but how many of them really get it? Very few- but the few who do are to be treasured.

It is not fun to live this way- wondering when the next attack is going to come or when the current one is going to end. Fighting things at home and fighting through the headaches just to live a normal life. I can certainly tell you that the life I live now, is not the one that I ever imagined for myself. I am thirty, living with my parents, unable to work due to migraines and unable to drive due to fainting. It sucks. This is the time, when they wanted to be dealing with grandchildren, not their youngest, sick daughter.

I wish I had better advice. The only way I can cope is to take it one day at a time, one episode at a time and hope that things will improve in the future. and sometimes, I just throw caution to the wind, forget about the headache and live in spite of it, but those days are few and far between.

Its impossibl to accept, hard to live with. But you have to live with it.

Pain free days,
sailingm

I know what you mean, the frustartion, the inability to plan, to work, to have some kind of routines, or to be available for our families at important times, letting the loved ones down, time and time again - all this can dampen the spirit of the strongest person.

However, we must not try to compare ourselves with MS sufferers - MS is an extremly unpredictable and totally debilitating condition which can be physically crippling during those long flare ups and it can be also life threatening, so it is best not to wish for it.
You never know how you are going to feel with MS either, so you cannot make any plans with MS either.

However awful migraine is, MS is a truly dreadful affliction.
I have seen some young MS sufferers when visiting Neurological hospital, and it breaks your heart to see how they are suffering, and how seriously they are affected by this condition.

You know I think about that a lot Sailingm - the fact that people assume life is normal because you have a smile on your face or you managed to drag yourself to work. Just because I'm sitting there smiling at work doesn't mean I'm either well enough or even should be sitting there. Yes, some days I do feel "ok" and like anyone, have my good and bad days but that doesn't mean I'm "cured" because I'm having a good day. My Pop who lived with terribly painful war injuries most of his life would always say that "there is someone else worse off than me". Sometimes I wish I had his positiveness.