Going backwards

[VanessaW]

Hello everyone, I hope you are all feeling ok today.

I just wanted to vent a bit if that's ok. This week my headaches have been bad after 5 or 6 weeks of them being very mild. Is this normal? I feel like I am going backwards in my recovery at the moment. The week before I had disabling nausea. It is making me lose confidence in ever recovering from this thing, especially as am supposed to be going back to work as a doctor in a month. I really have to go back because I only had one month of sick pay and my stupid work have not sent me the statutory sick pay forms, but overpaid me sick pay instead and are now asking for it back. Critical illness policy won't pay out. I am going mad with boredom, despite trying to keep occupied. It all feels like my life is in ruins. sorry for whining on, I know everyone thinks I am lucky because I don't have any obvious disability, and I do have some perspective of course and am grateful that this is the case, but I am fed up with feeling ill every single day. How do you all keep positive? I have been mostly pretty good and positive so far, but recently have lost it. I have even at times thought the unthinkable i.e. perhaps it would have been better for me if I had copped it in the first place. I know that's a terrible thing to say, surely I can't be the only person to have thought this?

best wishes

Vanessa

xx

[MaryB]

Vanessa,

After one year I struggle off and on with keeping positive. Right now I am kicking myself in the pants hoping to change my attitude. I went to the pool last night for the first time in months. It was sooooooo cold but thought it break my whining routine. I do have a sense of humor about it all but there are days,weeks everything wears on me.

I will go to work and see someone sitting around and be enraged because I cannot sit around and do nothing. That is my problem. I also cannot do any fine motor skill hobbies I like so I tend to be angry about that as well. Ok, this does not sound inspiring or positive so I will stop typing. Sorry I will think about what keeps me going with having so much holding me back. LOL

I have never wanted to win money more than I do now! $$$$$$$$$ would make it all so much easier for me!\

Maryb

[Winb143]

You never copped it Vanessa, we all have good days and bad .. I wont say sing again

Do what makes you happy, and tell the people you cannot afford to pay them, after all they gave you money !

Try and cheer up and whine away ..give vent on here, I do lol

Good luck

WinB143 xy

Hi MaryB xxx edited to say Hi to Mary

Edited November 2, 2012 by Winb143

[Sandi K]

H Vanessa, I've been there and felt the same way. I've felt like 'what's the point' and the dreaded word 'hopeless'.

Recovery is very slow and it's extremely difficult for people to understand that we are ill. We don't have a bandage on our heads with a sign that says 'broken brain-healing in progress'. Hey, maybe we should have some buttons made that we can attach to hats?!

During the healing process our bodies take us through all sorts of neurological symptoms. Our emotions go along for the ride and the whole thing is a roller coaster of ups and downs. How far along are you now? I think I was at the 3 or 4 month mark when I would cry at just about everything. Tears were constantly on the verge of eruption. This is a common thing that many of us go through.

I would set dates for when I would feel better. I'd say at the three month mark, then 6 months, then 9, then a year. Each time a date would come up I would get so down.

The thing is, I really do feel better. Better than I did at the beginning. I'm still healing and almost at 2 years. The timing is different for everyone and you just have to let your brain heal. It's your only priority right now.

Sandi K.

Xoxoxo

[amexdm]

Hi Vanessa:

It does seem as if sometimes we are going thru the dreaded one step forwards, two steps back. I am the most positive person in the world but the day in day out grind of SAH gets to eveybody. It is a rollercoaster ride. I am 15 months and at 60% capacity. I attribute this to working full time and going back to work too early.

But we all press on and hope that we will be better some day. No other choice. It is perfectly "normal" to wonder what might have happened. You're not whining and we all have felt this way at one time or another. Venting will help and know how others have coped. I hope this helps.

David

[Wem]

Hi

I have been observing this site from afar for a while. I suffered my SAH in Feb 2012 and like many others on this site I have been working hard trying to put together a recovery plan that will help me return to some kind of 'normal' life.

Vanessa this thread echoes so much of how I have been feeling this week. 9 months into recovery and I am supposed to be starting a phased return to work in just over a week. This has been initiated by me as quite frankly I need the money, and I am also frightened that at my age (56) I will not be able to find another job if my current employer decides to terminate my contract.

My employer has agreed an initial phase of 7.5 hours a week and my GP feels this may help me in my overall recovery. The fatigue is my biggest enemy right now and every time I think things are improving something comes along to knock me backwards again.

This week has been dreadful. When the fatigue hits I seem to experience all manner of strange sensations, tingling in my limbs, numbness and headaches. I have spent 2 afternoons in bed so far this week trying to calm the sensations down and give my brain some quiet time.

Today I went for a walk for the first time since Monday and it felt as though I was dragging a ball and chain around with me. I record the distance and the time taken to cover the distance, so I can see how I am doing on a regular basis. I was surprised to see today that it was not my worst time ever for the distance I covered and I took some heart from that.

I have come to the firm conclusion that my mood plays a large part in my overall recovery and sense of well being. Whilst there are days when it is extremely difficult to find any positives, and believe me I have sat and cried for England during those dark days, my main focus right now is to return to my family.

When I collpased in a coma they were advised that if the surgeons did not operate within the hour I would not make it through the night and there were risks that if I did survive I may be severely brain damaged.

My family were resolutely strong for me during that time, giving consent to the medical teams to operate and staying by my side in intensive care, not knowing how it would all end. I still do not know where it is going to end but I need to keep battling on until I reach a point where I can find some kind of contentment with my life. The only way I will achieve that is by focussing on the positives no matter how small.

I used to take life at 100mph now it seems a leisurely 10mph is all I can achieve, but that is more than my family dared hope for 9 months ago.

Today's positive was that I managed to walk just under 2 miles and it was not my slowest time ...oh and I have posted my first message on BTG!

Take care, tomorrow is another day in the long road to recovery.

[Daffodil]

Hey Vanessa

Sorry to hear the dreaded headache fairy has returned to your house. I imagine her a bit like the tooth fairy but far more vindictive and she always calls at my place when I am over thinking things. I have observed that if I go to bed with any worry it is magnified in ways it never was before my SAH. I'm really sorry to hear about the pay situation and incredulous that the critical illness won't pay out, that doesn't seem right, can you question that? If an SAH isnt critical then not sure what would be. I know that money must be playing on your mind, thing is I believe that anxiety, fear, basically any emotion can get heightened post SAH so if you can find a way to reduce your level of worries it may help. It's a bit of a vicious circle, the worry creates the headache which in turn brings more worry. I don't have solutions, I'm working on it too. Meditating is helping me, and each night a very calming routine and trying to let go of the worries of the day.

Having said all that if your headaches are increasing then you should get it checked out that there is no other cause. Without wanting to alarm anyone I had increasing head pain at four months out only to find the hydrocephalus I'd had with the SAH had returned gradually resulting in crazy levels of high CSF pressure. What I thought was normal head pain was in fact not! My advice ( and you're the doctor) is if your symptoms have changed recently you should investigate. I also know some people have had to have a couple of lumber punctures later in their recovery to drain excess fluid and that worked for them.

Big hugs. You're doing so well. We all take backwards steps in our recovery but it's incredibly demoralising and hard when they occur but you WILL get past this.

Wem. Welcome to BTG , youre a month ahead of me in recovery and it's good to hear about your work plans. Good luck with them and keep us posted. Well done on the walk today

[paul99]

hi vanessa

big hugs and cuddles sweetheart i do feel for you it seems money is the worst of the lot im pleased that you didnt buy it otherwise we wouldnt have met you im sorry that the headaches have come back would it be because you may not have kept your fluids up and let them slide a little bit hopfully the nausea has passed

you are very strong you have survived the worst that anyone could go through and have done so well so chin up on that front you have helped people on here big time so pat on the back for you

im am going to suggest that you take baby steps when you go back to work and put a bottle of water into your white coat and dont forget to drink little and often

i dont think they can enforced you to pay any overpayment in full in one lump so talk to them because they failed to send you the correct paperwork the fault surely would be on their neck not yours

i would recomend that you appeal about the critical illness insurance and get the neurosurgeon to send all the records to them but dont give up sweetheart

as to how you have been feeling its understandable and quite normal but dont you even think about the unforgivable or we will come round and tickle you rotten lol and dont you worry about whining on here that what we are here for

it does get better in time vanessa honest massive hugs and cuddles if you were nearer i would take care

[MaryB]

Vanessa,

Just wanted to update my non upbeat post to you this morning. When I got to work ( which I am only killing myself to do for the health insurance because I feel as if I am shorting my days left on this earth by pushing so hard). A co worker who is going through a difficult time said to me "I can be strong because I have you to look as an example".

There you go! MaryB

[goldfish.girl]

Hi Vanessa,

Sorry to hear you are feeling rubbish both physically & mentally at the moment. I think we all have times when feeling unwell just completely gets us down. I know how you feel with dealing with boredom but not having the good health to do something about it a lot of the time - it's very frustrating.

On a positive note though I always admire people on here who realise so early on that they are not well. I did the ignorance is bliss thing - 'I'm fine' & tried to keep going so it really is to your credit that you recognise that you are not better yet. I know it is the most annoying phrase ever to someone recovering from SAH but it really is still early days for you (sorry!) and you are likely to see so much more improvement over a bit more time. It might be worth discussing repaying the over payment with your employer if you are you are not quite ready for returning to work yet?

Hope the headaches ease soon for you.

Michelle x

[cathmat]

Hi Vanessa i think what you are feeling we have all felt , i used to feel i was unlucky because i survived , i now realise that s so not true . Im with sandy i wish sometimes i didnt look so normal because no one can see how ill you really feel. I Know everything is an effort and im really trying to build my confidence back up , On a positive it will be a year for me in 2 weeks and even though i dont see it everyone telll me how far i have come and i am going to up my hours to 30 next week, it will be hard but i am looking forward to the sense of satisfaction i ll get once i acheive it. I think it was stephanie who said "Im taking my life back " thats how i feel , so keep your chin up it will get easier but for now rest and listen to your body xx Cath x

[VanessaW]

Thank you to everyone for your kind support when I was in a pit of despair. Have clambered out of the pit for the time being. It's good to know there are people out there who understand.

warm wishes to you all

Vanessa

xx

[MaryB]

So agree Vanessa, I hate even bringing it up to my Non SAH friends and family.

[kpaggett]

Van,

My early posts were very morbid. It gets better and better. However, realize that your brain is healing. I know that I am one of the worst offenders of denial (I seem to do it repeatedly). How long does it take a peripheral nerve to heal? Ok, now think about it logically...it's going to take that amount of time for your central nervous system too or maybe even longer, a SAH even a perimesencephalic one is huge trauma to your neurons. Did some die in the process? Or are they just poisoned from the extracellular environment? We know so little about healing in the CNS it's pitiful. BUT, I find that even though I get devastated that things seem to be regressing, the overall trend is upward and it comes in steps not a smooth hyperbolic curve. I keep a notebook of all my symptoms, including feelings each day. It is intensive, but since I love research, it really grounds me to look back and see how far I've actually come thus far.

I'm not sure if any of this helps, but I also agree that meditation and yoga have really helped me to be further along in my recovery. I notice that I only get headaches when I'm stressed, so I thwart it as best I can. Meditating twice/day really creates a space for this. Knowing your body is your best bet to know when to back off and rest. It is hard to do, but it really makes a difference.

~Kris

[Daffodil]

Kris, that's such a helpful post. I had nerve damage in my elbow when I was younger and it took an age to to heal. It tingled, went numb, had pins and needles but gradually it got better. However If I overused it in sport etc, I paid for it. To view the brain damage in the same context really helps me understand the slow silent nature of recovery . Thanks for your scientific view.

Vanessa so glad you're Having a better day.

[Teechur]

So much good information in these threads, and lots I've experienced too. It especially hit me that headaches coming from "over thinking." Never in my life did I think that in reality, thinking would hurt but it DOES!

Recovering from a brain injury is not a straight road. It seems there are lots of fits and starts, and two steps forward, two steps back, three steps forward, two steps back. Overall, healing is happening, but it doesn't happen the way an orthopedic injury (in an otherwise healthy person) happens.

One blessing from this is that, as a teacher, it has given me a glimpse into what it is like to deal with high distractibility like my kids with ADD and ADHD. (I'm like the dog in Up, I swear.) I also understand what it's like to deal with cognitive disability; not being able to remember things, not being able to recall as fast, trying to understand something and it just doesn't work. As a doctor, you have the blessing of knowing what it's like to be a patient and what they worry about and how hard it is, sometimes, to trust that things are okay and your body is doing what it's supposed to be doing.

Has your weather changed at all? I'm dealing with worse headaches since the weather changed here. If it stays the same for three days, I feel fine the third day with light headache, or just here and there headaches. Maybe start journaling every hour and see if there are correlations to weather, food, etc.

I wish we all could wave a magic wand and be back to where we want to be!

You're going to be an amazing doctor again with a whole new perspective.

[Sandi K]

Teechur, that's how I've described myself too, like the dog in 'Up'. Distracted by everything.

Vanessa, don't worry if you get down again. This recovery thing really is hills and valleys. Thankfully we've got BTG to share our experiences.

Sandi K.

[MaryB]

Teecher, I got a really bad headache in my good eye today after lunch today ~ Super sunny day! I went to Dr.office and had my BP checked with was high and was told I had a migraine - recheck 1 week. I came home and put my eye mask on and started to walk to the sofa with it on my eyes to lay down. Thought of you!

[cworden0124]

Has your weather changed at all? I'm dealing with worse headaches since the weather changed here. If it stays the same for three days, I feel fine the third day with light headache, or just here and there headaches. Maybe start journaling every hour and see if there are correlations to weather, food, etc. .

I am having the same issue with the weather. I was always one to have really mild sinus headaches when the weather made drastic changes...but this year (after my SAH in September), I am dying! Sinus headaches everyday and then I get stress over them and the next thing I know by the end of the night my neck hurts...then when my neck hurts the muscles pinch nerves and the tips of my fingers go numb (that is something I found out about years ago)....It's been a rough couple of weeks lately!