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Mum of five

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Mum of five last won the day on September 14 2014

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About Mum of five

  • Birthday 16/10/1971

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  • Gender
    Female
  • Location
    Lincolnshire
  • Interests
    Life, my "boys", drinking tea and eating cake (sometimes)

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  • SAH/Stroke Date
    16th December 2013

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  1. Hi "the quine" sorry I don't know your name. I feel truly privileged to have given you even the slightest bit of support. I have read and reread your post and can relate to everything you are experiencing. It is not your imagination nor are you an attention seeker. You like myself and everyone else on this site provide free research for the specialists. We talk when the other 50% of sufferers didn't make it to have their say. We are the support for the 50% that beat the odds to survive and more importantly we are the sounding board and comfort when the medical doors get shut in our faces. Walk a day in our lives and you will only just begin to acknowledge what has happened to us, how far we have come on our individual journeys but more acutely just how very far we still have to go to achieve part of what we used to take for granted. Please go to your doctor and show them not just my post but every single reply it has generated because we can all help you. What you feel is real, what you say is valid just because it isn't visible makes it no less deserving of their time. It is up to us to fight for help not because they don't want to help but because they haven't walked a day in our shoes. To make you smile my mother who also had a sah just coming up two years ago is going for her first mri tomorrow as she still has two more unruptured aneurysms in her head. As you can imagine conversations between us can be amusing add that to the fact she is not a conventional parent ( cutting her hair with pinking shears when it annoys her, drilling completely through a wall to put a shelf up) who does everything herself albeit rather badly. So you can imagine my horror when she sent a text today saying how much better and lighter she felt now that she was "metal free", it had taken a while and she only managed it after "using copious amounts of veg oil". I have visions of her trying to remove her shunt, the coils in her head all sorts when she calmly pipes up that she is now finally........jewellery free for the scan. I couldn't stop smiling Take care all, we have all just completed another day Anita X
  2. Louise That is quite possibly the nicest thing anyone has ever offered to do for me. Thank you xxxxxxxx PS hate to admit it but you bought a lump to my throat and a tear to my eye X
  3. Hi all, an update. Following several suggestions i finally had a vague chat with my doctors receptionist last week about my broken down state.........four hours later following two different health care assessments I was back in hospital. Seems my laid back thought process on my current disintegration wasn't shared by anyone else. Lots of tests, ct, mri and plenty of tears ( I hadn't realised just how bad things were until they started the fine motor tests ) later I was finally allowed home three days later with the consultants telephone number with the "threat" that if i didn't call should I take a turn he would hunt me down ( lovely man honestly) and the promise of a follow up appointment in a couple of weeks. My appointment is 28th of this month. On the plus side I am not showing any significant increase in damage to my brain albeit there is some advancement nor do I have any tumours or lesions which is wonderful news. On the not so glorious side I have intension tremors, ataxia, weakness in my left side and something else beginning with d ( I had about maxed out by this time) there is currently still no improvement in my symptoms which is not what the consultant was hoping for but I am ever hopeful that it will be just another annoying speed hump on my journey through this wilderness. As with everyone else on this site we adjust to our lot and carry on life so that is what I shall continue to do. If the 28th brings another hurdle then I shall have to learn to jump higher. Metaphorically speaking of course I'd look a right numpty trying to jump when walking in a straight line is akin to finding golden eggs. Thank you to everyone, you are, with your words of support single handedly keeping me sane by providing an outlet for me ( hubby in another black hole) to air my concerns/ winge/ smile etc etc etc Mum Xxxxx Carolyn ........thank you thank you thank you. Your reply really made me smile from the inside. It's obviously not just me that miffed someone upstairs ( only waiting on the lightening bolts now) but the last paragraph made me laugh so loudly and not much stirs that hidden emotion anymore. Xxxxxx As someone said a person with depression is normally the one who could light up a room when they entered but who can also cast the darkest cloud. It's been four years now and my cloud keeps fighting to shine. X
  4. Thank you super. Unfortunately not, all our relatives live a long way from us, plus they are very small/ elderly in numbers. As for friends, I have the two best ones in the world both arriving at my bedside within hours of admission but again it's long distance 100+ miles. I rant and bless them they keep me sane so I have emotional support but physical is down to me. I used to get help from my husband but the effect on his mental state his physical circumstances has had mean I am at the bottom of the pile and more often than not am the butt of all his frustration. With his mind being more debilitating than his back it makes for some challenging days. I will as always close my eyes, count to ten and try and smile. Just a bit of a double whammy at the mo. Once I'm back on track all will be OK again. It'll just take me more energy, brain power and stamina for a while. Thank you again M.O.F XXXX
  5. Thank you to everyone, I will probably go to my gp but I think it will be the classic answer, reduce your stress levels. My hubby still has severe depression so is very hard to deal with, he now also spends most of his time in a wheelchair due to a spinal cord accident last year. My beautiful boys help all they can but two are just about to enter their gcse year, one is autistic so needs constant attention and the other two are just trying to be children......not easy in our house. Ultimately it's too much for their young shoulders. Stress or not it'll still be there next week,month or year so without trying to sound like a hero you get up each morning and just get on with it. This, I think, is possibly just a bad run but I will get it checked as I have taken another slight step backwards since opening this post. If nothing else I will get ten minutes peace in the docs waiting room
  6. Hi all, I hope you are all well? I am like a bad penny that disappears then returns once in a blue moon to try and make sense of my own muddled mind through everyone else's experience/advice I am struggling to make sense of my current level of "togetherness". I am two and a half years post blip so not a new member but in the last six months or so my mental state has confounded me. I have big holes appearing in my long term memory as well as my appalling short term. I forgot where the saucepans were the other day but they haven't moved for years. I couldn't remember a birthday ( that's a major anomaly for me). I forgot father's day for my father in law but bought presents for my husband from our children. I am becoming word blind, my spelling is shocking as is my grammar. My balance is shot and I have the attention span of a gnat that's just hit your windscreen at 70mph but more importantly to me I am devoid of all fluffiness. I feel nothing, long conversations bore me, little to no empathy. In a nutshell I spend my days being scratchy. I'm not a bad person and I don't believe I genuinely mean to be a battle axe but I just can't help it. In myself I feel great. It's like I am two people I'm happy and content but only when I am left alone. I hope someone can relate to this and share their thoughts because I'm stumped and have fast disappearing enthusiasm to sort it out. Dearest Win....I have tried singing but even thats not doing its thing Any suggestions will be gladly received M.O.F X
  7. Wow Issy that is like reading a personal description of my head. I think most of us have suffered with noise sensitivity. It does improve with time as I am two years this December and although it still plays a big part in my life it doesn't control it like before. My tip is put your fingers in your ears if you can't remove yourself from the noisy environment although it looks decidedly funny it really works. If my children are being too noisy I shout but obviously in public that's not really an option unless you want a taxi home in a police car so in go my fingers for a couple of minutes. I find this acts like a mini reset which allows me to clear my mind and survive until I can hopefully remove myself to a more head friendly area. I agree that people do sometimes stare but if it works then I can cope with that. Wishing you luck with your peace and serenity Anita
  8. Thank you daffodil, win & michelle, my husband has contact with a team who are available 24/7 they, when needed, do home visits for counselling etc and he has regular reviews on his medication. He's currently in an angry spell (we have various stages) at the moment which are always hard. Both myself and the children have had counselling in the past but due to funding etc it's only a short term thing. Usually I cope well with his "phases" but this one I feel is more personal than normal.There is a burning anger in me at how he can blame everything at my door even though I categorically know half of it isn't me however due to way I am now nobody believes me. My husband knows that I struggle with him sometimes but I just feel so far away from him and no matter how many sorry's I get or I love you's it's cutting a little deeper each time. I have a check up booked with my gp in two weeks time so I will mention all of this to him and hope that he doesn't say I have now become paranoid as well as a raving lunatic, or even worse give me the dreaded " we don't know" answer that they use when you ask anything about these little hiccups we've all had. Thank you again for your replies, as you say talking about it helps failing that it's a sledgehammer and some brown tape
  9. It's been a while since I last contributed to this forum, apologies for that. These last couple of months have been hard, I find myself actively defending myself in conversations as I feel threatened. Unfortunately my husband is bearing the brunt of this as in my mind he is the worst offender. A slight insight to him, suffers severe depression to the point of making attempts on his life, he was a loving gentle man but is now sometimes very aggressive and we ( myself, my husband and especially my sunshine boys) have had to cope with a lot over the last three years since he has been in the grip of this terrible illness. Before my sah I lost all my hair through the stress of trying to keep him alive, care for five children and hold down three part time jobs as he couldn't work. It's fun in our house...... Christmas of last year he under went a back operation as two discs had ruptured and were resting on his spinal cord, a condition called cauda equina. The operation left him with use in only one leg and following a subsequent fall in August he now has no lower movement and is confined to a wheelchair. This has rocked our world as you can imagine but worse happens at sea as they say. Lately though I have felt that my "quirks" are used as an excuse for anything and everything. True I suffer terribly with my memory, however, I tell people how proud i am of myself when I remember something no matter how small it may be. Recently though no matter what I say he never believes me, only tonight he has accused me of not putting my tablets in the right place in the cupboard. I assured him they were there reminding him that he even asked me what they were for as I put them in the cupboard the other day. For ten minutes it was an angry twenty questions, are you sure?, did you move them? I think you are imagining it etc etc........he wonders why I am confrontational? I'm sorry to ramble but I feel like I am the proverbial "buck" where everything stops. I know he is struggling but due to the depression I can't say anything right most days as he becomes very argumentative and says it's always me that causes an atmosphere. I'm no saint I know but I try my best every day to keep things as close to normal as I can for all of us, but I'm so tired, mentally, physically and now emotionally I feel like just getting on a one way plane to somewhere there is no stress.
  10. Hi again, an update on the latest sah battle. My mother is finally starting to respond, she spent two weeks in a coma in the end. She has now been moved to a step down ward although her care is still being overseen by itu. She has just had her trachy out, she is off the ventilator but her csf is infected via the drain in her head so she is receiving antibiotics through a drip, anti epilepsy drugs as her brain is fitting and she doesn't really recognise us but she's alive.. I always knew my mother was a tough old boot ( I hate to say we are very similar ) but she has shown just how strong she is. Thank you to everyone for their kind words of support it helped. My sister has calmed down and has resumed normal behaviour and although I do a two hundred mile round trip in school hours every Wednesday and I spend all and every weekend with her a smile from her makes it ok. My son's operation went really well and he has healed fantastically, one of my other son's had his op two days ago and again is doing well. I just have to get me back on track now, massive head/neck ache, extreme tiredness and an ever increasing deficit. I think I probably rival the UK deficit now. Just to impart some info with everyone, I have spoken to the powers that be and yes it can be hereditary but they go by generation s so my sister is now being screened but as it is their mum and their grandmother my children don't have to be tested.
  11. Hello to one and all, I haven't been on for a while. I need some help/ advice from anyone and everyone. I had my sah on the 16th December last year I like most people were given the statistics 8000 pa of which 50% don't reach hospital etc etc. Sunday just gone my mother had a massive SAH it's a grade four with haematoma, she has been given a 20-30% chance of survival and is currently in a coma in intensive care she also has another large aneurysm which is currently unruptured. I have come home for two days as my son is due an operation but will be travelling down again early Friday morning. My question I guess is if this affliction is as rare as the powers that be say then why oh why am I stood not even nine months after my first bleed watching my mother fighting for her life. I have gone through the last few days feeling decidedly detached from this whole situation (possibly the only plus I've ever found with having had a sah) even though I have nearly got myself run over twice, fallen down the stairs and had many a detour when I start going right again. It is quite clearly registering in my head but not with my emotions which is a blessing and I believe the tools that have got me through the last few days. The doctors fear that if she does make it she will be significantly brain damaged which is a whole new world as she's been a widow since I was fourteen so will need full-time care. My sister has turned into the wicked witch of the west demanding she has power of attorney, removed money and jewellery from my mother's house etc etc saying I haven't a clue what my mother is going through as I survived so mine was obviously not a "real" sah or a patch on my mother's, given that my sister only visited me for an hour on day nine of the three weeks I spent in hospital and not once rang intensive care or the ward to see if I was still alive I find incredibly stressful. This additional stress is going to be having an impact on my own well being even though I can't feel it which obviously puts me at risk again. Any help would be gratefully received
  12. Hi Susan Five isn't quite as daunting as it seems , they help, care and entertain each other and despite their protestations love each other dearly. Our house is hectic but filled with personality as they range from 12 down to 4 yrs. I always joke that even the cat is male. If you count my husband then I have six children and he's bar far the worst sometimes but as we say a family that laughs together stays together. They keep me young and even at their worst they still give me a reason to fight Take care Anita
  13. Hi Susan you could almost be writing for both of us as mentally and physically I can't and won't give up. I have five young children and they, more than ever now, need normality and if that means I stifle the scream some days then so be it. My husband thinks that by not accepting my "lot" that I am in denial but it's not denial it's not quitting which is a totally different thing. If everyone in life believed what they were told we'd have stopped existing centuries ago I don't have the pleasure of knowing you well but I have to say I am amazingly proud to have crossed paths with you
  14. I wish you well for your tests and hope they come back with good results Remember your own advice sing happy songs it lifts the soul Good luck Anitax
  15. Thank you to everyone who has passed on their valuable experience, I'd had a really good week til this so maybe the scale of the fall was my undoing rather than the comments or perhaps I just need to do a bit of spring cleaning in my friends closet. I think ( too much sometimes ) that as human beings we go with the flow and if we hear humour over a certain situation we automatically assume that we to can join in when in reality it's simply private humour and as such nothing to do with us. I was and still am smarting a bit from it but I'm a thick skinned old boot and on the plus side with the dire short term memory issues I'll have forgotten all about it by tomorrow. Today I have been to the beach which is just up the road, smelt the fresh sea air, felt the warm sun on my face, held my husband's hand, talked, walked and laughed. Yes its a bad day as the painkillers aren't stopping the party in my head and I've walked more miles than my husband as I'm seriously wobbly today, it's taken me ages to get my words out and I couldnt think straight if my life depended on it BUT it was a day of feeling alive. If tomorrow comes and I feel no better then so be it because one day I will feel better and it will be thanks in part to everyone on BTG, you really know how to pick a girl up when she's so low she's in danger of cleaning the floor with her nose so thank you. Anita x
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