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DawnS

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DawnS last won the day on June 13 2015

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  • Biography
    I live in Northamptonshire with my partner of 11 years. It seems that SAH runs in the family, I'm now the third person in as many generations to have one. My gran's brother 'dropped down dead' when he was 27 of a brain haemorrhage and given the rest of the family history, I'm assuming it was sah. My Mum died of sah almost 10 years ago and now I've had one. My brother has been screened and he is clear so that's a relief, we don't want the full set now do we!
    I had coiling done the day after the haemorrhage, there are 6 sets of coils in there despite only having 1 aneurysm. Something about 6 being the optimal number, I can only go by what my other half tells me that the consultant told him. My memory used to be absolutely dreadful, but it gets better all the time and now I know what I did yesterday. It's took a long time, but I know I'm lucky.
  • Location
    Northants
  • Interests
    Reading, birdwatching
  • Occupation
    Goods In Administrator (was)
  • SAH/Stroke Date
    14/08/2011

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  1. Hi Gemma, yes I just popped into the job centre. In our town, the sessions are on a Thursday after 14:00, though I imagine this would vary x
  2. Hello everyone, I hope you are all well? I don't often post anymore, but I made an important discovery today and I feel the need to share! I've been back to work for over three years now. My initial return was very challenging and unsupported which resulted in a change of role within the business. Today, I had an appointment with EADS. It was a very interesting meeting, and I'd like to share what I learned for anyone who is currently considering a return to work. My bleed was in August 2011 and I went back to work 53 weeks later. I wasn't actually ready, but the reason for my return was that they had started proceedings to dismiss me for capability. I was only entitled to contributions based benefits which were about to end and so in a bit of a panic, I argued their decision. I began a phased return, but no reasonable adjustments were made in spite of recommendations from the occupational health team. In the meeting today with EADS, I found out that work should not have begun these proceedings so early on. Reasonable adjustments MUST be made under the equalities act and when I moved departments, my phased return should have continued. Instead, and because of a lack of knowledge and understanding on my part, I jumped from 20 hours to 40 over the space of a weekend. Reasonable adjustments were not made until 13 months later when I ended up in hospital and had 3 months off sick as I was so unwell. If you are considering a return to work, please, please make yourself known to EADS. You self-refer and they have drop-in sessions at the job centre. It is a service that you are entitled to receive. They liaise with employers on your behalf. Everything is out in the open, the employer is made aware of your circumstances, deficits and strengths. Reasonable adjustments are discussed and confirmed before employment starts and EADS stay involved for a while after you have started. I just wanted to share this, because had I known about EADS when I first went back to work, I'm sure my return would have been far less bumpy and exhausting. A return to work can be very valuable so please get all the support that you can.
  3. I've come to this topic a little late to be of any real use, but you may still have meetings going on for some time. Here's what I learned from my return - take notes during any meetings. If your employer sends out a letter outlining the main points of the meeting, compare this with your own notes carefully. The letters I received from HR confirming the points of our meetings missed out very important things, like the fact that due to having very sensitive hearing I would either need somewhere quiet to work or at least be allowed to wear earplugs which had been agreed upon verbally. My cognitive functioning hadn't healed enough for me to realise this point was missing from the letters. On my return, my manager refused to allow earplugs, my fatigue levels soared and I had nothing in writing to fight with. Try to negotiate as many breaks as possible. My first shifts were only 4 hours twice a week and it was a couple of weeks before I was able to take an unpaid break as no-one believed it would be needed in 4 hours. It is needed. The first few shifts back at work are a big learning curve. Make sure you can have some undisturbed quiet time when you get home. I hope things are going well for you? Work is very different after sah and it is very easy to dwell on the negatives. Feel proud of yourself, realise that every completed task and shift is an achievement. Good luck xx
  4. I was strongly affected by the weather in the early days. Almost 4 years on, the weather adds to my fatigue but has nowhere near the impact it once had. As everyone else suggests, it's best to check any new symptoms with your GP
  5. Food tasted awful when I got out of hospital. To be fair, food tasted awful when I was in hospital - I'm told that I refused to eat most days. I had terrible stomach problems when admitted and was actually put in a private room with barrier nursing because they thought I had an infection. It turns out I react badly to dairy products and the drip I had was some sort of creamy stuff. When they realised this, they fed me on plain boiled rice and boiled white fish. How surprising that I refused to eat! I lost over a stone in 18 days. On getting home, all I wanted was ice-cream. I was only interested in sweet food and when eating savoury, I would have taste distortions where the food would suddenly become extremely salty or fishy, or both - like smoked mackerel. Yuk. It took many months for this to go away. The desire for sweet food remained and my GP told me I had to get a grip and force myself to stop eating yummy things as I was getting quite fat. That stone didn't stay away for long that's for sure!
  6. I think the sleep problems may well be the worst after effects of my sah, it drives me insane. If I have a decent night, I can pay for it with several bad ones. Last night I was awake until 02:30 and then got up at 06:30 for work. This does not work for me! My GP insisted that I could not have any medication because sleep issues after sah need to settle down on their own. I saw a consultant October 2014 for the first time since the bleed. I left hospital 02.09.11. She was surprised that no medication had been prescribed and asked me to see my GP for Amitriptyline. I almost felt smug when I went to see him for the prescription! Well, more fool me. I slept well for about 9 nights. My GP had advised that I could go as far as to triple to dose if need be. I doubled the dose and slept well for almost a week before reverting to the old routine. I then tripled the dose and it has made no difference whatsoever It perhaps makes it worse that my partner could fall asleep instantly on a bed of nails....I'm a bit jealous!
  7. I used to have fantastic night vision. I could read in extremely low light and there was no need to put a light on if I got up in the night. That all vanished in the bleed. I can't even read in candle light anymore when treating myself to a long bath. During the day my eyesight is usually ok, but my right eye can get blurry and will feel like there is something in it when I am fatigued. I was told that after sah it's best to have an eye test but that is something I haven't gotten around to yet - it's only been 3.5 years
  8. About a year after my bleed, I stated to feel like I could cope with exercise again. I saw my GP and he agreed that I could go running on the condition that I start off like a complete novice with plenty of walk breaks. I started off with 30 seconds running and 90 seconds walking. I built this up very slowly because if I push too hard too soon, I become so fatigued that I cannot sleep and I can wipe out the next day and sometimes longer so it's just not worth it. Pushing can bring on headaches, dizziness, ringing in the ears and a nasty metallic taste in my mouth. I am now able to run for 1 km without stopping to walk so it's not exactly record-breaking but it helps me cope with the stress of work.
  9. SarahLou, I hope you find a balance that is good for you. The unfortunate thing about 'reasonable adjustments' is that it's up to the employer to decide what they feel is reasonable. How about listening to what we feel we can do? I had hoped to work 4 days of 6 hours - Monday, Tuesday, Thursday, Friday. It would mean that my employer would only lose me for one hour over the week, but I would gain an entire day in the middle to rest. I was told that this could not be considered at all. If they had a good understanding of brain injury, they would realise that my performance would be so much better if they gave me the hours I wanted. How do you get on with studying? I haven't tried any yet. I'll admit that I'm afraid to because I used to learn easily and quickly and I don't want to find another deficit. What a chicken I am!
  10. Hi everyone, how are you all? I wonder how everyone is getting on with work? It's been a long time since I logged onto BTG as last year was rather a challenging time. Happily, things have settled down nicely. After my hospital stay last April, I ended up having 11 weeks off sick. I had lots of meetings with my manager and HR. It was decided I should have a phased return which weirdly, was a lot longer than the phased return I had after sah and 54 weeks off! My targets have been cut out from 3 different targets per hour to no targets at all. During my phased return, when I reached 25 hours, I found that this was as much as I could manage and so my contract has been changed to 5 hours per day, 5 days per week with a 30 minute unpaid break each day. This has made an astonishing difference to my health. I do still suffer with headaches, however, the days of becoming so exhausted that I cannot talk, think, or walk on a perfectly flat surface without stumbling seem to have vanished. It's a huge relief. I'm very blessed that my partner is still as supportive as ever and gives a lot of financial help which is essential now that my wages have almost halved. I hope everyone is doing well? xxx
  11. I had my sah 3 years ago and my Mum died of sah 12 years ago. It seems to run in my family. However, my brother has been scanned and he got the all clear and has been told not to worry about his children. I'm sorry to hear what's happened and that you are not getting any support from your sister. How did your son's operation go? I hope all was successful x
  12. My operation was emergency surgery so there were no choices. The original diagnoses was by CT and I too have been told there was only one aneurysm. I have been checked at 6 months and 2 years with an MRI with contrast. Each time the all-clear has been given and I'm also going to have a 5 year scan. They won't just operate and leave you to it, there are further checks. I agree with the others, Google is not always useful. It's great to find out more information, but it can also give you a lot to worry about that you would otherwise have been happily oblivious to.
  13. Hi Vanessa, I'm sorry to hear you are still suffering with headaches and nausea. Being in pain is such a grind. I am almost 3 years post sah and I suffer regular headaches, I am currently on day 6 of one right now. I used to think it was my brain's way of telling me to slow down, but I've recently had 11 weeks off work and can honestly say that the headaches didn't reduce much. Being at home made them easier to cope with rather than forcing myself through the day with ibuprofen! I still see signs of progress in my recovery now, though this is more obvious when it's something measureable. As an example, I have a game of mahjong on my Kindle. It used to take me 10+ minutes to complete one game, but recently I've played it again and was able to complete all 172 games in less than 4 minutes each. Do you have anything from the early days that you could revisit and notice the improvements? I'd love to wake up refreshed, get through my day and have some cheer left at the end of it, but I don't and I can be a bit moody about that. Even my long-suffering eternally supportive partner doesn't always get it and can often take it personally when I have the grumps. I've explained a thousand times that I am not irritable with him, I just have no tolerance left by the end of the day. With regards to exercise, my GP advised that I could start running again perhaps 18 months into recovery. Running keeps my depression away and has for many years now so it's important for me to be able to fit it into my week. He did strongly suggest that I start as a complete novice. I began with blocks of 30 seconds running and 90 seconds walking. Over time I have built this up very gradually and now I attend the gym 3 times per week. I run in blocks of 5 minutes with 2 minutes walking which means I can do 3K in 21 minutes. It wouldn't win medals, but I'm happy with it. I haven't been to the gym even once this week because I am far too exhausted. We had 2 friends for dinner on Saturday night, they stayed for 3.5 hours and this is me still paying for it. Now that is the kind of change that gets to me. What happened to being able to socialise? Please check with your GP before starting any exercise. Well done for returning to work. It's hard when we feel so rubbish, but try to look at how far you have come and the achievements your have made x
  14. DawnS

    Help

    Hi Dune, welcome to BTG! I had delusions to begin with. These were strongest while I was in hospital (3 weeks) and gradually lessened as I got used to being at home. The delusions were very detailed and I was completely convinced that they were real as a result, how could they not be? After settling into being at home, I was very confused for a long time. The flat looked different somehow, I had no idea what day, month or year it was. I also had serious issues with time distortions. 10 minutes stretched on and on and seemed like hours. I would often say things that were complete lies, I didn't mean to, it's just that on opening my mouth to speak something entirely invented would come out. It's very good to hear that being firm with the staff has brought positive results. It's easy to assume that the professionals know best, but you know your wife better than anyone. I suffered from vasospasm days after my op. My partner had to insist to the staff on duty that I really was not myself at all and that something was badly wrong. His insistence resulted in me being readmitted to neuro ITU for immediate treatment. As vasospasm can result in brain damage, I am very lucky that my partner insisted! Best wishes to you and your wife x
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