Moving on?

[goldfish.girl]

Hi everyone, I really can't think what to name this thread (moderators please feel free to give it a better title )

This time last week I was silently thinking that I had kept going all day every day without the afternoon nap that has been a daily feature for over 4 years. I was reluctant to post this because it stopped out of nowhere & no-one could have been more surprised than me! I was exploring thoughts about 'can this awful fatigue just stop, just like that, overnight, in the same way as it started'? In the same way as no-one has been able to explain why it didn't get better over time, was it possible that it just could one day? I have to say I was DELIGHTED but couldn't tell anyone because I couldn't quite believe it had happened

I was thinking that maybe now that all the stress of applying for various benefits, attending medicals etc was over, my brain had been given the peace & space to recover. I was even thinking, OMG, what do I do, I am well again.......I can go back to work at last! The aim has been for several months to apply for a voluntary post & just when I thought I could do it a morning or 2 each week as I know that I need to sleep in the afternoon, the goal posts have changed i.e I can do it non stop for 2 weeks then I can't do it at all for a week. I really thought I knew my fatigue limit & had learned how to work with it. Now it seems like it will tell me when I can & without prior warning so that I can plan my time.

I only told one close relative who advised me to give it a bit more time. Then I crashed in a MASSIVE way. I had had a persistent headache for several days, different in that there was no let up at all at any time of the day or with the pain medication that usually helps. On Tuesday night it got really bad and then I started to vomit. I can honestly say I have never been so scared as that is how my SAH presented. I cried like a 5 year old. I had phoned my GP earlier to ask for alternative pain relief as what I had just wasn't working (this was before I started to vomit). Today (3 days later) is the first day I have felt well enough to leave my house. My head still hurts but not as much & I am still getting waves of nausea but not actually being sick. I feel like I have had a taste of how life used to be - being productive all day, every day & the hope that this awful post SAH time was finally over, then a reminder that it might never be. But I am hopeful now that maybe the good spells might last longer if they keep coming?

Is this something other 'old timers' SAH wise have experienced - thinking you are suddenly better, then finding out you are not? It is an improvement (???) to get to a point where I can keep going all day so maybe the start of more good things to come?

Thanks, Michelle x

Edited October 5, 2012 by goldfish.girl

[kempse]

Hi Michelle,

Being an 'old time saher' (almost 4 years) I could have written the first part of your post myself. I too was amazed how my tiredness suddenly stopped and I got through day after day without a daytime nap. I remember thinking how strange it was that it had happened so suddenly and being able to get through days, as I had pre-sah, was a great feeling although I couldn't quite believe it was happening, expecting any day for the crash to arrive.

I am sorry to hear you had such a massive 'crash' - that must have been quite a scary setback for you. In comparison, I've just had a couple of minor 'near misses'.

I certainly wasn't expecting it to last as long as it has (approx 4 months now), but I am more inclined to think that it is possible for good spells to come and be longer in duration - at least believing in that gives us a hope to hang on to!

Anyway, having been awake now for almost 17 hours and wondering if this post makes any sense, I think it's time I went to bed!

Sarah

[goldfish.girl]

Sarah - thank you!

I remember reading your similar post a while back & thinking 'Really?? That can't be really true' It is so good to hear that it was and that it continued! I am hoping that the same is happening here, it makes no sense but you are living proof that it CAN happen, thank you xxx

[MaryB]

Being a new SAH'er and an old timer Fibro person, I spent 17 years or so thinking I was finally cured everytime I had a good day! I think that means I have a positive outlook! But I would always crash and be so SHOCKED when I did.

I was like Mary 1989 version yesterday only to drag my rear end around today! But those good days or weeks are well worth it. It gives me hope and it has to mean something. It always feels so good to have a productive day for myself. I maybe cannot always put my arm up to reach for the stars but as long as I get to have some great normal days it makes up for it.

Hugs, maryb

[sallym25]

Michelle,

Sorry to hear the good spell has elapsed. On the other hand it's great to hear you've had one. I hope this was a sign of things changing for the better and that these spells progressively become longer and longer. Since taking on the extra hours at work recently I have had regular periods of not getting a snooze straight after a long day. I do still feel I am 'zombie like' on the whole. Luckily I don't really do anything in work as the shop can be very quiet. It makes for a very very long and boring shift. The lease on the shop is due to end in two or three weeks and I will possibly have no job after that. I am hoping I will still be able to muster the motivation to get up, dress and use time productively. (my house is starting to resemble a shed as I really haven't found a way to keep myself going of an evening ) . I am a great sleeper of a night time and have noticed that, when I haven't had a nap after work too, I am not as refreshed as I'd like to be in the mornings but secretly chuffed i'm still on the go. Perhaps we will all soon be finding ourselves closer to the 'old us' in the long run. I'm feeeling hopeful now.

Sally xxx

Edited October 6, 2012 by sallym25

[Macca]

Sally,

Thank you for posting this. I am slightly envious but delighted for you. It also gives hope for the rest of us. May the light that shines on you shine on the rest of us soon - you first Michelle, sounds like you need a break and no-one deserves it more!!!

Macca

[MaryB]

I believe that those of us who have no choice but to work are putting ourselves at a great risk of maybe a heart attack??? Or something. I am on so much medication that puts me at risk for one and I am already in that high risk catagory. I have to say life style is one thing, but to have to work for your health insurance is crazY! I find it morallly wrong. At the point in my life being 53 years old is different than other people place in life.

I know my life would be much easier if I could concentrate on my recovery only. I feel I have never HAD an easy life so to speak. Certainly not as hard as some but still others often say to me often how much I have overcome in my life so that must mean something. I think for me it is "normal". Maybe I know a lot of really fortunate people? I don't know.

I feel if I had parents to care for or children to raise now I would FREAK out. I do not think I have one ounce to give anyone. When I think back at our 4 (5) parents being ill and dying one at a time and taking care of them and raising my children at the same time how hard that was and how unfair it was to not be there for my kids and not be there 100% for our parents. Being torn between the 2 and still working. I cannot imagine that life now. I would be clinically depressed and never get out of bed if I had to have that life again with this brain.

I do not know how anyone like you Michelle after an SAH can raise a child with an illness that woud stress me out to the max. I am so impressed that you can muster yourself up everyday to take care of Dylan. I kwo we do what we have to do but I would be exhausted 25/7. I would never have any spoons. I cannot do 2 hours of paper work and not feel spent. I can go days with only grunting at my husband ( lucky he is ok with that!)

I do think a stretch of good days is a light or at least a bit of a better new normal to come??? Don't ya think? I do. I so think of how my auto immune issues have been a roller coaster ride for years. The years it took to be dignoised and treated, the years of people saying "Well ,You look fine". I am fooled all the time with the good days and would kill myself catching up on chores etc... people would say if I paced myself I could have longer bouts of good days but they have always been wrong. I seize the day when they come! AS if I paced myself it never mattered.

So I think a span of good days is "a good thing" as long as you do not let yourself get dehydrated, work yourself to the point of no return or ride a roller coaster or do something totally crazy ( like dance or have fun?? LOL).

And once again not to be morbid but I know that taking the Ritalin is not a good choice in some peoples minds and not for everyone, but I do not care if it puts me at higher risk. But at this point in MY LIFE I have my children raised, I have spoken to my Dr.s about quality of life and what that means to me. It should be my ( and yours) personal choice that I alone can / should be able to make. I sometimes feel I should carry my DNR papers with me. I spent over 4 years with my mother in nursing home and I cannot go there. I do not want to live without being able to communicate or function at what I feel is a level I can live with. Maybe it is because I have a brain tumor and if it's starts to grow it will not be an easy choice to have it removed safely. I do not know. But I must and will use my time left on this earth making the most of the life I have been given, the cards I have been dealt.

Although all of our SAH's are different with different out comes I know at only 1 year and 2 weeks into it I still feel like an old timers for the past 15f-17 years of not being healthy enough to have the quality of life I wanted. Somedays I say God was trying to get my attention and other days I am like Shut UP! ( NO KARMA please for being honest). I will do almost anything to get those good days and the more the MERRIER!

marybmerrierandyoutoo!

[goldfish.girl]

Mary, thank you for your lovely, understanding words.

I think I can honestly say that having gone through the unbelievable stress & months of waiting for decisions has been incredibly hard on a brain that is trying so hard to recover. I've done the application forms & medicals for all the appropriate benefits. Doing my sons one was the last major hurdle (the wait for the outcome will take several more weeks) but I do feel that it is all over now, I've done all that I can & that may well be why I am feeling better? The added stress of sick children/relatives & holding down a job is not possible while you are trying to recover and fight the welfare benefits system (in my opinion - I know others opinions will differ here).

I think it is horrible that in the US you have no choice but to keep working so your health insurance is valid. I may be barking up the wrong tree here but I think it will be interesting to see how all the stress being over affects my recovery. Obviously, if my sons' disability benefit does not continue, we will be in a very difficult situation financially and I already know that trying to look after him, attend all his appointments & work full time to be able to live & eat is not possible. It has been a big adjustment to go from earning reasonable money to being a full time unpaid carer but I am happy to not have the material things that I'd like for the time being. We have a roof over our heads & food to eat - it's a different life style but all the basics for living are in place.

I honestly think that taking the stress of our situation away and giving my brain peace to recover has helped.......We shall see..... I'm looking forward to finding out

[Louise]

Being an 'old' old timer SAH'r Yeh! as I say swings & roundabouts - just when you think woo-hoo Wham!

Sending you big hugs 'n' love.xx

[amexdm]

Im right with you Michelle,

I have thought about this subject often and actually considered starting a thread as well. So we'll continue here. If i were to start the thread I would have called it "IS IT POSSIBLE"? Meaning is it possible to just wake up one day and our symptoms go away. Kind of like a cold or flu. Has this ever happened to any SAH'ers? I ask this because last week I had two days Tuesday and Thursday where I felt "normal". We all now what normal means. Mine occurred from 1-5pm. No headache or fatigue. Like the old me. Sadly that was two weeks ago and didnt last.

But it leads me to wonder is it possible for us to just wake up one day and be better? As Michelle said as unexplained as why the fatigue wont go away, could it just be better some day. I believe Sarah experienced something to this extent several months ago. So IS IT POSSIBLE? While I am surely encourage that it happened for me for four hours in a day, I know it is unlikely to happen overnight.

But is there hope? Any vets out there? Thanks.

David

[Winb143]

There you go David a thread on will we ever get better.

I have days when I am so happy I dare to think "on the up Win yay " back aches but not as much, so all good vibes.

Next day someone only has to go boo to me and I lose it, Always been like that lol

I think we will all make it, A long haul but I am sure our life will be great, after what we have been through it has to be GREAT.

Smiles and laughter, We are Living Proof we just need to be positive that we can overcome it and when on a downer BTG helps

us so never give up any of us.

We have learnt who our friends are and we can carry on Thanks all.

Love

WinB143 xxxx

[kpaggett]

Hi all,

I can only share my experience here. I have times where I feel pre-SAH and then times of devastating crashes. I used to nap every day and now I never do...and that did lift suddenly. The crashes are getting fewer and the pre-SAH feelings are getting more often. Sometimes I can turn on a dime. I feel 'Normal' wile I'm out with others and then I crash at home. I feel bad about this as it affects mostly my husband whom I care about the most. He says he can handle it though

I often ask myself, 'Is this real?' when a symptom creeps in at night. It is so hard to know that it is, and that it is OK that my symptom, that has been gone all day, is actually happening and that I can't control it.

Yes there are SAHers out there that feel totally back to normal for the most part. I like to keep in touch with them as inspiration. I WISH they'd post more often to give us all a jolt of hope now and then. That being said, it is also inspiring to hear that some of us still improve as the months and years tick by. All of our journeys can be good for one another...that's why this site (BTG) works.

Michelle...My neuropsychologist told me once that when a symptom abates, even if it is only for a short time, that it represents your neurological potential. Usually, it's a precursor to more of the same yet to come. I have found this to ring true for me, I hope in your case, it will too.

~Kris

[Louise]

Kris, i have had lots of improvements after years passing....

No you cant control it - its life it just happens....

[Winb143]

Glad to hear you have good days Kris xx

We shall treasure them

Be Well

WinB143 xx

[goldfish.girl]

Kris, I like your neuro psychologists way of viewing this I do think this in an improvement at last and I hope it will lead to longer periods of 'normal'.

As an update, after the 10 days of no naps, there were 3 days of severe head pains (not helped by the usual pain killers) and another 2 of no energy to even get washed & dressed. I am now on day 3 of a new period of no afternoon naps. I do get very tired by 3pm with head pains starting at lunchtime & muddled speech & balance problems BUT the difference I am finding is that rather than have no choice but to stop, lie down & sleep for 2 -3 hours, I can choose to keep going (with all the fatigue issues both mental & physical). The downside is that I am too exhausted to be a good mum when my son comes in from school - I am bad tempered, snappy & just horrible to be around by then. I am also, on day 3, struggling with muscle fatigue after doing so much in the house & garden.

Interestingly, the increase in physical activity & reduction of day time naps has not added to the night time sleep (I was back up from midnight till 2am last night). I am still very hopeful that this change is a major improvement 4 years post SAH but I still need to adjust to working with it to make life go back to the even keel I had achieved recently.

I did speak to my neuropsychologist today about this change & while she is very pleased & encouraging me to keep going forward after hearing my news, has asked me to consider if a rest/sleep in the afternoon would be advisable to avoid the afternoon mental & physical slump and avoid a further several day long crash. Definite food for thought, I need to learn how to just be but maybe try to stop doing, doing, doing because I am still awake??? I did tell her that I feel that just when I finally learn how to work with it, my brain goes 'bang' and starts a new set of rules

Dear Brain, I accept your challenge and look forward to raising your stakes??????

Michelle x

[DawnS]

Hi Michelle,

I have just found this thread as I've not been on BTG much since I went back to work. I'm sorry to hear that the good times didn't last long but like Kris says, surely this is a sign of potential?

I have never ever been able to nap since my sah. Besides the fact that my brain just would not let me go to sleep, if I did manage to nod off then I was sure to be up practically all night. This was driving me insane and I decided that it wasn't worth the hour and a half I might manage in the afternoon.

Like you, I keep doing, doing, doing. I have a huge fear of being bored. And I get bored so easily I can be bored while I am busy! Since I started back at work, to keep going on and on just isn't possible. I am experiencing fatigue like the very early days and as a result I've started doing things like watching a movie in the afternoon because at least that way I am occupied and I am forced to sit still for 2 hours. It's basic but it works!

I hope the good times come back and get more regular for you!

Dawn x