MaryB Posted November 20, 2012 Share Posted November 20, 2012 I am off today and only work to noon tomorrow. I will do treatments on Thanksgiving, all day Friday and 1/2 Saturday. I need a plan to get through that. Tuesday I see GP. And Dec. 4th I see neuro again. I am sure I will start to ball when I start talking to my GP ( I know I never cry).Think today I may start the low dose of ritalin back, as I have a headache & vision issues either way and it was not a side effect of ritalin. I also read (google) itching is a SIDE EFFECT of many pain pills so they suggest taking benadryl with it. Work perfect last night. I should of take it at noon though and not suffered all day. So question being how far do you push your body and brain daily to get through a day? I think less medication is better but I cannot make it past noon or somedays even earlier before I need lay down. I wish I could recall if I felt this miserable before I was given the Ritalin but I do not think my eyes - sunlight bothered me as much as it does now. And I certainly was not having headaches everyday anymore. I was just creeping into that maybe in early October and it has just gotten a bit worse or more noticable. I also probably was only needing pain medication once every 10-14 days now I could but dont take it daily. It may be the fibro & weather change on top of the brain thing but ???? So how far do you push yourself to get through a day? DO you still have to lay down everyday? For how long? Headaches? Thank you, maryb Quote Link to comment Share on other sites More sharing options...
kpaggett Posted November 20, 2012 Share Posted November 20, 2012 Mary, I've kept a DAILY log book about how I feel and what I've done. I find that if I'm feeling bad that pushing myself is never the way to go even if it pains me to accept this. I feel so defeated when I have to take a step 'Backwards' and do less for a while. This comes and goes in cycles, but the overall trend is it continues to get better and I can see this in black and white. However, this doesn't stop me from WANTING it to go faster or be done with. The wanting doesn't change anything though. I want to be one of those who has a 'Complete recovery', but even if I am it's going to happen at its own pace not mine. For me, I don't want any drugs or any more doctors. Neither have helped my slow climb to recovery. I am not against them...if I ever hear about a solution that is fabulous, I would be the first one to try it, but alas, I haven't seen anything that can convince the skeptical approach I (being a neuroscientist) take. I hope that you can come to a peaceful solution for you individual case. I think you will. Good luck. ~Kris Quote Link to comment Share on other sites More sharing options...
Winb143 Posted November 20, 2012 Share Posted November 20, 2012 Not wanting to sound lazy but I do as much as I can do and no more. My back aches and head swims when I overdo it, so no point as then I am shot for following day. I want to be able to do what I did before SAH so mentally I can ..but physically I am shattered. I feel good when I have walked, but pain in back is so bad I want to cry. But it wont beat me, this SAH, I will get through it somehow, I must for me and family xx Love to All WinB143 xx xx Quote Link to comment Share on other sites More sharing options...
Sandi K Posted November 20, 2012 Share Posted November 20, 2012 Mary I'm so sorry these crazy symptoms are with you everyday. When I was working I struggled like this too but it's not nearly as hard for me now. The symptoms have eased signigicantly because m able to rest as I need to. I remember you mentioning the issue with sunlight prior to the Ritalin. I remember you were working outside and the sunlight bothered you a lot. I don't push myself very often anymore but when I do I pay the price. The symptoms for me increase with fatigue. The more tired I am the worse they are. The Dexedrine helps to give me a boost and luckily it's not giving me headaches. Sandi K. Quote Link to comment Share on other sites More sharing options...
goldfish.girl Posted November 20, 2012 Share Posted November 20, 2012 (edited) Mary, that is such a good question. I also remember that you had problems with light before Ritalin. Today, one of the Dr's spoke about my son learning to manage his symptoms, including headache. A while ago I would've asked 'what are you talking about, what do you mean, how would he do that. Just DO SOMETHING to make him better NOW'? because I still hadn't learnt it myself. Today, I agreed with her, we need to find a way to do this. I also pointed out (I am every brain Dr's worst nightmare now I think ) that it takes a very long time to do this, it took me almost 4 years and for a child this gradual reasoning isn't going to happen i.e if something looks like fun, they are going to do it. I think I have it worked out now, 4 years post SAH I know what I can and can't do without being floored for days. I can choose to do it regardless & am aware that I will be tired, sore & dizzy for a couple of days afterwards OR I can choose to not do it and maintain the good balance but miss out on things. It takes a very long time to know this (perhaps others will have the sense to learn much quicker than I did???). The down side of learning how to manage your symptoms is that others exclaim that you are better now & doing so well........sigh, if only they knew...... It takes time Mary,but you will get there in your own time. Michelle xx Edited November 20, 2012 by goldfish.girl spelling Quote Link to comment Share on other sites More sharing options...
amexdm Posted November 21, 2012 Share Posted November 21, 2012 Mary, Great question. I think you know my answer. But at the risk of having this post edited I would say i push myself to the maximum. With work, I don't really have a choice. But by 5pm i MUST lay my head down for a few. Lately due to headaches I have been nauseous and not even wanting dinner. How you have made it 17 years through all this is amazing. I'm having a tough time at two. Perhaps you can teach me better how to deal with this. Rest helps but when does that happen. If you need help this week, please let me know. David Quote Link to comment Share on other sites More sharing options...
DawnS Posted November 21, 2012 Share Posted November 21, 2012 Mary, I too remember you mentioning problems with sunlight. I think this was around the same time that we had weeks and weeks of solid rain here in east anglia, which started on the day the hose pipe ban came in. I remember you asking how sunlight affected others and I remember thinking (selfishly!) that I'd like the chance to find out. I have not taken naps for a very long time because of the insomnia I suffer. I could have an hour during the day and be stuck awake until 5 in the morning but would then only get about 4 hours sleep. It just wasn't worth it to me. I am lucky in that Andy works alterating shifts. This week he is on lates and so I have complete silence when I get home. I think this makes a huge difference to how I feel and how I get over my day. I do tend to push myself a lot physically, which is fine for things like housework and gardening but I have learned that I cannot do certain things like visit too many people in one week. It must be something to do with conversation. After work, I still get my housework done, but I do it in stages. As an example, when doing the bathroom (which is the smallest room in the flat) I'll clean the radiator, toilet and mirror, then sit and read a few pages of a book. Then I'll go back and clean the window, window sill and sink before sitting down again. I'll polish half the tiles and so on until I've done the whole lot. In this way, I get everything done but don't feel like I'll drop down dead by the end. My headaches have increased dramatically since returning to work, but they are easily controlled by ibuprofen or paracetamol. Unhappily, I have noticed that chocolate seems to be causing headaches. I am ignoring that for now and am hoping it's a minor glitch Quote Link to comment Share on other sites More sharing options...
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