still worry

[donna79]

Hello all

I seem to be on a negative spiral at the moment and I have been referred back for some councilling (this will be my third time)

I am 5 years since sah in April and every day still is a task for me x x

I have headaches, dizzyness everyday and cry alot

I spend every other week at the doctors with the above and normally end up crying in surgery x x

I have tried every med and they put it all down to ANXIETY (which yes I do suffer alot from) but mostly brought on by the above feelings x x

Does anyone else suffer with these and the fear of it being something going off in my head x x

I am due my MRI in April and even though I hate them (clostraphobic) ? spelling

I keep telling myself that if I get the all clear from this then I WILL go abroad and live my life I am fed up with everyday being a chore and think my family have had enough to x x I have no close friends to talk to and close family have their own personnel issues x x

If there is anyone out there struggling please feel free to message me x x I really dont think we are alone x x

I am also poorly at the moment with a virus so my whole head is hurting x x x

ONE DAY I WILL WAKE UP AND BE OK X X

Sorry to be on a downer x x no one else to talk to x x x

lots love

donna

xxxxx

[Winb143]

Donna,

Chin up and cry as and when you need to.

You are not alone as I bet we all have down days, well I do lol.

I cry at the drop of a hat and when I mention my daughter I go to sobbing stage, like this Ready?

" Myyy sob sniff Sarah sob wahhh" then I pass the sobbing stage and out comes swear words.

Try and sing happy songs, and good luck Donna

All the Best

Love

WinB143 xxxxx

Edited January 28, 2013 by Winb143

[DawnS]

Hi Donna,

I am sorry that you are feeling this way. It's difficult when you feel like you can't talk to your family, sometimes you can feel like you have over-stayed your emotional welcome huh? I hope that the counselling helps, have you tried CBT? I found it particularly good for anxiety as it makes you challenge your own thought process.

Also, chamomile tea works absolute wonders with anxiety. It sounds odd I know but after you drink it, you can actually feel yourself calming down. I used to use it in my previous role. It didn't solve anything, but it helped me cope with the attitude of those around me and for how effective it is, it's actually pretty cheap.

I hope you feel better soon x

[Gill C]

Donna it is only natural to worry but my way of thinking is this:

I trust the surgeons with my life, they saved it! If they tell me I am fine and time has proved that to me then I really need to believe that i fine. I know for months after the surgery I would pray to wake up the next morning but as time went on I realised I was fine without the praying.

I really feel for you but like you say this worry is stopping you from living your life & creating new memories for you & your family.

CBT is good but it takes some getting into the swing of things. I used to suffer from panic attacks when I was at college so I devloped my own coping mechanism which was to set myself small achievable goals for each day, then for each week & give myelf a treat when I met that goal. It all starts with a single day and then before you know it its 2 days then 5 then a week. Small steps Donna but it does need you to take control of the fear

Big hugs to you (( ))

[KeithH]

Now then Donna

Think we've been here before, and if I recall, you got through it.

I remember you thanking me for all the information I sent you, and you even said I've been more helpful that some Doctors.

I only passed on the information the Doctors SHOULD have given you.

If you've misplaced them, I'll resend them to you.

Maybe, your GP should look into other therapies, to help you.

Your not alone in how you feel, lots of people are not able to be as open about it.

And being open shows you want to be helped, thats a good thing.

You said sorry, to be on a downer, don't be.

Bottling things up, will only make thing worse.

Stressing about things, also doesn't help either, cut out all NEGATIVES!!

Your BLIP, seems to have a hard skin, lets burst it together.

This site can and will offer all the Advocacy & Empathy your require.

It's FREE

NO APPOINTMENTS

and ALWAYS SOMEONE HERE.

You take care, watch out, one day I might pop through that door.

and kick you up the butt with my bad leg:lol::lol:

[Louise]

Oh sorry to hear your feeling like this - Keith yes.

YES I felt exactly like you did Donna in the early days & there was no one to help me I just gave myself a good talking too, maybe thats why I can be a bit forward now I dont know....

Keith's right maybe other therapies could help wouldnt be any harm in asking.

So in a nut shell after 5years why worry it aint gonna happen - get on with life its for living.....

hugs.xx

[KelBel]

Hi Donna

Sorry to hear you are feeling so down at the moment.

You look like such a lovely bubbly person

It is so hard to feel positive when you are ill and suffering.

I do hope this next round of counselling helps you. It can't all be put down to anxiety surely??..

You have been suffering dizziness all along, and you are not always feeling down like you are now, so surely there is something that can be done to ease this symptom.

I do hope you start to feel better soon, and knowing there is always someone here to hear your worries and concerns is a help in itself.

Take care

[Wem]

Hi Donna,

Oh boy, recovery from a SAH is surely the single hardest thing any of us has had to face. It is scary, but like Gill my philosophy from the early days has been to put my faith in the experts. They are not necessarily good at communicating and providing the supportive emotional after care we all strive for, but they certainly saved my life and for that they have my eternal gratitude and much admiration.

For me getting through each day has been an uphill struggle from day 1 and being able to explain why to those around me has been almost impossible. Those around us see a relatively healthy individual, they want you to be healthy and struggle to understand how they can help. Our whole lives, and how we react to situations, is based on previous experiences or guidance from others around us. This is a whole new ball game for most of us, so we do not have past experience to draw on.

My advice would be to take pleasure in the simple things in life. Find something, no matter how small, that will give you a sense of purpose and start to rebuild your life. Worrying about what may happen is draining your precious energy reserves. As others have said take one day at a time, and if you should stumble do not despair, as with anything in life you will stumble. The trick is to get back up and continue on the journey.

Keep going, you are amongst friends here, we are travelling the same long road with you.

Wem

[donna79]

Thank you guys I am overwhelmed with the advice and help x x

I am normally a bubbly person and used to be the life of the party x x

I don't know if this dizziness is something I have to live with or not x x I am seeing a sleep consultant on Thursday has hey feel it could be related to that so will see if any outcome and will keep you all updated x x this virus I have at he moment is playing havoc on my head at the moment x x x I should be working tomorrow so I think. Am going to try and push myself and see how I go after 3 days on sofa x x coughing and ear ache x x

I really aim to go abroad this year and when I have had m MRI and results I am going to book x x my biggest fear that I will feel worse with my dizziness and be sick and panic x x x x but I want to take my 6 year old on a plane and watch him in the pool x x x

whos flown at all and how long was flight x x x

thanks again

donna

Keith I don't seem to be able to find the info you sent me last time x x do u have more copies ???

[Karen]

Hi Donna,

I have the same as you and still alive and kicking and nearly 8 years on! I know it's hard and it freaks you out, but I suffer all of the same things as you do. Do I worry, yes I do. It would be abnormal not to, in my opinion. But, don't let it affect your future. I've spent too long worrying about what may happen, rather than living life and when I look back? I can only say that I've wasted too much time and too many years worrying about what life may hold, rather than living it.

Don't make the same mistake. Go abroad, do the stuff that you need to do with Ant and Jack (hoping that I have the names right! ) ...If you're worried about the flight, then many Doc's will give you a low dose sedative, such as Valium to take the edge off it and it helps to make you feel relaxed.. I know many people that have the same worries with flying and they haven't had a SAH.

Lots of love Donna xx

[KeithH]

Keith I don't seem to be able to find the info you sent me last time x x do u have more copies ???

Donna--They'll be on the way soonest, I'll send them via e-mail, Word Doc & Royal Mail, Printed Copies & CD-R

Anything Else, ASK.

Edited January 29, 2013 by Karen
Quote

[MaryB]

Donna Darling,

I feel so bad for you. I can only say what works for me ~ Old and wise ya know?? I have had to learn coping skills 20 years ago as I am a chronic pain sufferer. No one believed me when I had fibro prior to being diagnosed and even after some look like I fake it. But I have a wonderful GP and that is helpful as he knows it is real- all the stuff with head as well now. I have adapted my life style the way I do things and such forever. I am even amazed at work when someone needs 2 or 3 people to take a dogs temperature as I have always worked weekends alone I have learned how to adapt and come up with ways to make my life easier.

I will not allow my mind to be consumed with WHAT IF’S in my life as I have a dear friend who has wasted so much of her life with that and made her family all with whom have medical issues just miserable. Life is for the living – RIGHT NOW. I do not listen to that voice in my head. I really do not anymore. I used it to quit smoking in a good way 100 years ago but I won’t let it say negative things or fill my mind with worry. IT EXHAUSTS me like nothing else can. So there are ways to shut that voice up.

Couple of things I try not to concentrate on it too much. I do more than I like as when I walk I have blind spots and almost poke my eye out on a branch or something OR I THINK I am running into something that is not there. I discovered I can sit and look around now but when I walk in grocery store or my worst nightmare- I notice if I stand still and graze the items and not walk I can handle it better. I cannot handle noise and that I am not so good with at work I want to just hide somewhere quiet. I came home last night after buying a frozen pizza for dinner and I do not know if I said anything to my husband – not even thank you when he brought me my plate. I completely need to be alone. Not even energy to talk.

I only have clothing that fits in my closets and dressers so I do not have a hassle picking something out as I cannot make decisions. I like task like sorting my spice cabinets – everything neat and organized helps me so much and I can focus on these little task that give me great pleasure when done. Sounds silly but I can be very happy in the basement sorting and what not forever. It sounds like busy work but I get great pleasure and satisfaction with completing task that organize my life.

I still have many issues and questions left unanswered and I am frustrated by that but I know they have no answers for me. The thought of having my tumor removed scares me to death but I do not think about it. I have to let it go and worry about that when the time comes. It is work but I cannot let it drive me crazy. I need to be thankful for the good and sometimes I have a hard time seeing the good. Like an inspirational poster makes me want to slash it!!!! It is like yea, easier said than done!

I work hard to daily do my best but I tend to overdo it and pay for it but I know that is how I am and that is still a work in progress. Good luck, mary

[MaryB]

PS about the MRI- the first time my head was stuck in one I said I was not clastrophobic (SP)! I did not know!!! I was freaked out. But I learned to breathe, keep my eyes close or have a towel on them- they should just DO that anyway!

I know this is not proper to write here but I think about my brother in law former fire chief trapped in a burning car with his great granddaugter in the carseat in the back seat - he was paralzyed from waist down at the accident and his window was only 1/2 open and he managed to drag himself to safety. The weird thing was he accessed the situtaion and knew what he had to do while in shock but the bystanders ( pile up accident) helped no one which was so unreal and he had never seen that in all his years of rescue. I see this as unfair to this man. I see this as why does HE knew that nightmare?? My point is when he panics in the MRI or CT machine I get it and say I am so glad I am not Tedd trapped etc and having THAT nighmare of a panic attack. I can talk my slef down adn stay calm saying " I can do THIS".

Also one of my dear friends lost a child and she said the saddest thing was the only time she was not stuck so deep in her own grief was when someone had a worse story about losing their child. I knwo that sounds awful but it is so true in life. I use this "method" to snap out of it at times. Sometimes those handful of life changing events are there and we need to learn a lesson from them. I sat and listen to a few in my life that were markers of how and when my life changed.

I am no way trying to make you feel bad or take away anyones right for grief or frustations of where we are at personally or medically but this is how I cope. I do not think this PIA head thing is anywhere near the pain and suffering some of my family & friends have gone through. Even though they say I am their hero, I am only coping well though knowing how much suffering others have had. I did not or will not forget the lessons of courage from them. I am terrified of the angiogram so that is where I would need sedation and some real help so I have my own fears but I can find a way to cope now.

[Super Mario]

Donna, I have said before that I live with permanent dizziness. I have learnt coping strategies like fixing on one point at a time whilst I am moving about. If I don't I become nauseous as the whole world spins. My balance is poor too and I use the frame all of the time but that is no guarentee that I won't fall, I do, even out on the street. I don't care anymore, let folk think what they will.

About 12 months after my SAH I decided I had to get on with it come what may, I was still here and that was a blessing. I now look for the +ve in everything.

As you may know I travel abroad lots, 4 or 5 times a year, and on my own. Flying gives me no problems at all, just like sat on a bus but smoother. I take each day at a time and don't worry about the future.

If there is one thing the SAH has taught me is life is for living and enjoying. We have been given a 2nd chance so I make the most of it.

[Daffodil]

Great advice through this thread and Ive taken strength from it today as well as the last few days my dizziness and symptoms have been a bit crazy so my negative head won over my usually positive head and also have had CAT scan, X-rays and bloods today so feeling a bit pants. Thanks from me.

Donna , you say you've had a head cold. Look at people who suffer those who haven't had an SAH...my they do complain, so if you've had one last week then it's gonna make your dizziness worse, sorry to say but true. Give yourself a break here.

There's a saying that time spent worrying won't add even a second to your life. I'm not saying stop worrying , none of us can completely but you need to find ways to live with the worry and not let it consume you. We are the lucky ones, I always think that had I known 10 minutes before my SAH I still wouldn't have been able to do anything to stop it and there's someone out there in the next day who will have an SAH and won't make it so I need to get on with my life and weather the storms as best I can because I've got this chance of living. Maybe a long time, maybe not, but I'm alive.

My kids are young like yours and I have tried to do things bit by bit that bring back normal little by little. They get annoyed sometimes that "I'm always ill" but the first time i get to do something I haven't done in a while, like when i went swimming with them again, was amazing and they love you regardless. I think the longer you leave something the more fear can build up so set yourself challenges and tick them off one by one. Try new things.

I haven't flown yet so we are planning a trip to Scotland to test the water on that before going further afield and we will probably drive to Europe this summer in search of sun. Donna, try to find different ways of doing things rather than just stopping yourself doing it ,if you don't want to fly then don't but find a way of getting there which in itself may give you a lovely experience. Equally a paddling pool in the garden can give hours of fun so don't beat yourself up for not doing stuff.

Finally I'm sharing an apache blessing which I find very comforting. Hope it's not inappropriate.

May the sun

bring you new energy by day.

May the moon

softly restore you by night.

May the rain

wash away your worries.

May the breeze

blow new strength into your being.

May you walk gently through the world

and know its beauty all the days of your life.

[goldfish.girl]

Hi Donna,

I'm at the same point as you time-wise (5 years in July). I also found at at my last MRI (it was also my 1st as I'd only had angiograms till then) that I am very, very claustrophobic. I go for another in July this year & already feel like I can't breathe just thinking about it.I don't want to go back in that machine & I worry that as I didn't stop smoking, there will be something new for them to find. I plan to ask for some kind of sedative this time. I worry, I know I need to change my lifestyle, but right now I just don't know how to. I can only deal with each day as it comes.

I think we also 'spoke' on here before about flying? I have only flown a handful of times in my life. I don't like it. I flew last year for the 1st time since SAH, I still don't like it but it was no worse than it ever was before SAH. I took my 2 boys on a holiday in the sun, this was the first time I have ever been able to afford to, my youngest is now 12, my oldest is 22!!!! Worth every second of the flight to have those memories & photos to remind me of the moments I forget. I know that you will feel the same after your holiday .

For me the dizzy, off balance feeling is regular but not all the time. The headaches and the fatigue are every day. I have found that once I stopped fighting to beat them & be BETTER and started living my life around these issues that it has all gotten so much easier (although my life, especially my social life, have got a lot smaller & quieter ). I still hope that I will wake up one day and they are gone. Maybe that will happen, maybe it won't. Until then I have to work around them, not fight against them.

It sounds like such a simple solution. I know it's not both financially & emotionally and it's what I have to do for now. I'm happier on the whole since I accepted this.

Michelle xx

[MaryB]

Flying itself did not bother me but the crowds, noise and movement did and I was very off balanced for a few days. Now I look back and I think it was we did too much. I should of rested the next day more etc.. I was shocked that I was not as well off as I was at home in my normal rountine.

I cannot fit another thing in my life either. I have a GP appt tomorrow as I have given up trying to exercise on my own I cannot do that with working. And i know myself well enough that I need to be in a class suz at least I am competitive (they say). I have had high cholestesol forever and cannnot take the medications as it makes my muscle hurt,. BUT now they have newer meds out. Since i have already had a stroke and some damage, along with up adn down all over the place blood pressure I fear eating right is not enough for me and do not want to press it! I am giving in to the meds.

Back to having children at home....When my children were younger and in school our parents were all dying one by one. I was doign the raising kids and taking care of parents at the same time and none lived closer than an hour away. I felt liek a horrible mother for not beigng present in my childrens life with school events etc... you see those parents that dont work and never miss anything - i was not that kind of mom and I felt guilty for beign spread so thin. It felt unfair. What I found out now that my kids are in their late 2o's is that they learned much from their parents being stretched thin and stuggling with crisis and all that.

WE made our wills when the boys were young. I had a plan. We both had big life insuracne policies so if somethign happened to one of us the other could afford proper care for the kids. I wanted a grandma nanny to replace me when Dave was working, someone that helped with meals, homework etc... I felt so much better having a plan. I think in life we all need a plan. Sometimes a back up plan to leave an abusive sitution or a plan for a torando or some kind of back up plan for life where we are. It helped me with knowing my kids woudl be OK with or without one of us. Because we planned and did not sit and wring our hands about making hard decisons. I knwo have an end of life plan I had updated this summer of the conditions I will not or will be kept alive if something happened. For me after handlings estates of parents etc I think it is the least thing I could do was not to leave the tough decisions to my hsuband when he may be thinking with his heart and not his head. I am sure none of all my planning will ever come into use but it just felt better to have things covered just in case so I did not have to worry about oe more thing.

On that happy note I will not reply to any more BTG post today! Sorry for being so straight forward - you know us Americans....

[kpaggett]

Donna,

I have these things which I call 'Rants'. They last about 1 hour and I just spiral down the existential drain. I cry almost everyday, but for me, I recognize it to be not typical so it's been Identified by me and my neuropsychologist as neurological as I didn't ever do it before my SAH and don't normally react that way to stuff. So, are you depressed or have feelings that don't seem to match your mood? I also find everything catastrophic or devastating at the time, but then in the next instant I am totally OK. If I were sick, I'd be crying and feeling so much!

I'm not sure if this is similar to you, but at least I hope things pick up for you.

~Kris

[Skippy]

Donna

There's some fantastic advice on here hun. There are a lot of bugs going round at the mo and the one near us is a sinusitis virus - my head has been in full fat pain mode since Saturday and I've been getting waves of dizziness and nausea.

I'm at a point now in my recovery where I feel 100% a majority of the time so when something like this hits me I feel terrified too. But you know what? I'm now past the point of worrying about something I cannot change - I couldn't stop it happening before and I won't be able to stop it if goes again, but I'm making sure that I live my life to the fullest and doing what I can when I can. There are days when I wonde if its all worth it but deep down I know that it is and that I am truly blessed to be alive.

Worrying does add to the symptoms hun and I know it's hard to stop worrying but try to.

Just as a matter of interest - have you been tested for labrynthitis? The Head at my old school had this and she felt dizzy, anxious and nauseaous to the point where she couldn't get out of bed for two months and she hadn't had a SAH - just worth asking your doc if its a possibility.

Take it easy hun.

Lots of love

[jess]

Hi Donna you know I have the same symptoms but my MRI was clear drink loads of water and relax and book that holiday abroad enjoy life Donna you have too. Jess.xxx

[MaryB]

Ok Donna~I know you are most likely really sick of seeing my name next to a post but I found this pamplet that was given to me by maybe Keith??........I look at it often and I do many things sitting down- sorting I love to sort and organize now. I should go work in a silent factory somewhere. Anyway I hope this is a help.

http://www.gloshospitals.org.uk/SharePoint5/Patient%20Information%20Leaflets/GHPI1016.pdf

maryb

[donna79]

Thank you all,

I do listen to all your advice x x

i have seen a consultant for sleep problems and the tests have come back fine x. So another thing ruled out x x

i am due to see doctor on Friday to discuss results and I will mention my ears Sami because they do cause me problems x x

i have a virus at the moment so not helping me at all x x on antibiotics so making me feel sick x x

I keep pushing myself its hard at times and I think it is this that gets me down x x get fed up of feeling like it x x x

but thank you so much guys for your advice x x x you are all very special to me x x x

love donna

[julie1961]

Hello Donna,as i'm a new member of BTG i've been reading through a lot of threads i came across yours and wanted to tell you i flew to fuetaventure(spelling.lol)at xmas 2012 just 4 mths after my SAH.I was nervous if i'm honest but was fine.I made myself go for the sake of my husband and 12yr old daughter and it was our first xmas away ever.Also i know its early days for me but i still have a good cry.The thing is everyone thinks your back to normal but the worry is in the back of your mind.I hope you're feeling better.

Edited March 3, 2013 by Skippy