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About Doonhamer

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  1. Hi Lynne, I'm sorry you have to deal with this type of thing. You need to keep pestering them ALL the time. It's so difficult. This isn't about you - it's about them. Basically, the NHS is crippled with coping with COVID-19 and struggles through with the budget constraints. Currently they have people on furlough and closed procedures. My husband is waiting for a hip operation, due on 10th March - despite pen leg on the day - and it can't be scheduled. We don't want to get in the way of other procedures, but the budget management started in 2018, not in 2020, with my own SAH in 2019 causing further delays. Where you encounter a clear block, it is awful (I mean really awful) then a private appointment can help. This got me driving again, and it got my sister to have her cancer removed, where there was a lacking of consultants. I am the last person who would want to recommend this, but it can help. The minimum is that you need to continue with complaining and chasing on any follow-up. The NHS process allows for management of complaints and budgets, not management of problems. The only way it really works effectively is with emergencies. You need to keep pressing with anything where you are not being helped. Push where your treatment can be progressed and where it can be done, with the right timing. Fiona x
  2. Veronica's post is so true - relating to my own condition. It's quite amazing. Thank you!!
  3. Hi Rajdeep Gosh, how to hit you when you are on holiday! Does it help being near your parents with the kids? I had to go to hospital 100 miles away, and I found my recovery accelerated when I was moved to the hospital nearer home. The hospital was new and it was close by to visitors, so it really helped. The journey is awful, but was worth it. Your journey is much harder. Be close to where you want to be. Good luck! You are getting better 😊 and sleep plenty 😴 Fiona x
  4. Hi Matthew Yes we definitely have fatigue, and people experience it differently. For me, I forced a full working day by sleeping at home for 12 hours. Now I have no job (contract ended) and my pattern is different. I did a lot of physical work this morning and came down with a migraine. I'm still worried about not being full-strength and I think that's why I got the migraine itself. Sleeping is good! Fiona x
  5. Hi Lynne I hope you are getting on OK. For any emergency you will be treated if you need it. In Scotland, there is a parliamentary discussion to agree for the restoration of non-emergency treatment. I'm hoping it is soon because my husband needs hip replaced. I'm afraid I don't know about stents, my aneurysm burst. I wish I had known about it. Hope you get treatment soon. Fiona x
  6. Hi Ggirl I was sedated on 7th Feb last year, and I was re-joining consciousness on maybe 28th, and closer normality on 1st March. The dreaming was weird! I was detached but people talked to me and this influenced my dreams. I hope this works for your father. I should also add that I spent time trying to escape from the bed while I was only partially awake! My eyesight was terrible too, so it was quite frightening, half dreaming. I am now fine - it just takes a long time to get better. Fiona x
  7. Hi Jean, You're so right. One year is not enough. The hard part is trying to prove that you're getting better and that you're not useless. It's quite difficult. Weird, isn't it! We have to concentrate on getting better, and never give ourselves a hard time. Thanks so much for mentioning HRT too. I definitely will consult the GP. Fiona xx
  8. Hello Mark I’ve missed this already, not looking at the right folders. Well done! Looking at this, you have nothing to worry about. Time will likely give you every thing back; - Double vision This can take well over a year to get fixed. My eyesight is totally normal after over a year. Any wine takes me back, nearing 3 degrees or 5 degrees depending on how much! -Going to bed expecting to feel better in the morning and then not Sleep always helps! -Aching muscles, I am literally wasting away and have lost 7 KG! (I started at 97 though!) Start with easy exercise and it comes back. Don’t worry about weight. Cheers Fiona
  9. Hi Sally, I'm late here... again. Please don't worry about migraines. I had them for years and years beforehand. Often due to oestrogen - I got many more when on combined contraception. Usually the full aura, but not always with a headache. I've not had many in the last 10 years. However I did get some really scary ones this year - but this means a migraine starts with different symptoms - something like a brainstem aura. I'm so glad it's a migraine and not the stroke I thought it might be. I think the SAH gives you different symptoms from what you had before. For migraines, try and see what might cause it. If it does start, make sure you take time out and have some rest. Calm always wins. Fiona x
  10. Hello everyone. Thank you all for helping me over the last year. No surprises that I am late in my submission...! Anyway, too much time on my hands just now. 7th February 2019 I was at my work, and during lunchtime, I had a very sudden headache. Luckily they had first aiders and were adamant that I needed to go to hospital. I took a silly idea to get near to home and went in a work taxi from Edinburgh to Dumfries DGRI. I can't remember anywhere from about the outskirts of Edinburgh, trying to tie my head to a headrest. Dumfries scanned me and sent me straight back to Edinburgh! Despite no memory, I emailed people that night. The Western put me down for an operation but wasn't first in the line, and I had a second bleed overnight. What happened next? Well, for me there was a lot of dreaming, very strange. There were hospital beds, strange drips, North Africa, Northern England, France, Outer Space, Norway & Iceland, Alan Partridge in Southerness, Wales mountain climbing, you couldn't imagine! There were people nearby who could be in the dreams... wasn't sure what was happening. For my husband and my family, they were terrified by what was happening. My husband's first wife died in 2001 from a brain haemorrhage, making this terrible for him to endure, and an impact for the rest of the family. The operation took place on the following day, and I was kept in a coma for safety for some time. Eventually, around 28th February, I started to recognise people, but I couldn't see anything properly. My husband, sisters, mum and a couple of friends. I remember trying to escape and mum trying to make me stay in the bed! Strange doctors (dream or not?) said I could go to Dumfries on 1st March, and some reality started coming back. When I got to Dumfries, my husband gave me my specs, and I could start to understand my surroundings! The room - single with en suite and an outside view - that really helps! My husband also brought me a guitar, and I found I could retune and play! Singing was a bit too hard, stringing words together, but the family were overjoyed. My mum used to be a nurse, and she was adamant that my catheter should be removed, helping me feel better. I started speech therapy, walking/moving, occupational therapy, etc. As my husband is retired and can help me full-time, this meant I could get out of the hospital much sooner than otherwise. I couldn't walk more than a few steps or get off the ground. It's funny how you lose the use of your muscles while asleep. You've also stopped eating. I had to learn how to walk and how to eat. At least there was good food at home compared with hospital. A dog is so much help, getting me outside. Within a week, I had forced me to walk long distances and climb hills. I was banned from driving. My right eyesight was skewed on 42 degrees! I was told it could get better when the blood drained, or I might need an operation. I had to wear an eyepatch and eventually got frosted glasses. The eyepatch helped me get onto an e-bike, giving me some sense of freedom. Bike mirrors are required! I was supposed to see the eye consultant in May for checks. Now, I didn't have a "proper" job. Having been made redundant in 2017, I'd been forced to do contracting. This made me feel horrible about using time at home, without any sick pay. I also missed being able to use my brain to test it. I was so terribly lucky to have been working with old friends who could help me go back to work. I started back about 10 weeks after the incident, and they were all great towards me. Within the final two weeks of the placement in place, they gave me a new contract for six months. Getting there to work was difficult. Dumfries & Galloway has no direct public transport to get to Edinburgh. My husband had to drive 40 miles before breakfast to get my train. The only way I could cope was to book a hotel in Edinburgh and to spend some time working from home. Staying in the hotel allowed me to spend time out of work being asleep! Nobody tried to force me working full days, but it wasn't hard to get there, simply by sleeping. I couldn't watch much telly or read books at that time anyway. I realised early on that I could not write sentences in the way that I used to. I had to keep any sentence to be very short. I decided to buy Grammarly to keep me writing appropriately, and this year I am now at a situation where I know that Grammarly is incorrect! I found weird situations for learning. I used to be able to do touch-typing - and I still could - provided that I had something visual. I could type by reading someone's mouth, but if I turned my head sideways - with no visual - I couldn't touch type! I had to re-learn different ways to understand I could do touch-typing. Everything comes back slowly, you will learn, but it takes time. I hated working on the telephone only, as I'd miss sentences and understanding. If an online meeting has a visual display (e.g. PowerPoint or video), everything is much more comfortable! I now realise why I had always been a visual-type person for learning. There was one person at work, who couldn't cope with me asking about the missing three months, and me trying to join together some of the missing elements. There was only this single person who knocked me sideways. However, everyone else was fantastic. I got to June realising that I could pass any test for driving. This meant that I could get into a car! My nurse suggested that I fill in a DVLA because I couldn't get an appointment. This let me drive - wahey! I also visited Edinburgh Western, and this was when the nurse told me about Behind the Gray. The photo shows me that day wearing a black contact lense. Worn ONCE and thrown away! I looked pretty good that day, but it was too difficult to use, better off with specs. However, after two weeks, I got a phone call from my GP. She said I'd have to stop driving because I'd need to see the eye consultant. I was devastated! I'd had meetings in May and June with the optometrist, but I could not see the eye consultant, and there was no ability to make another appointment. At that point, I nearly lost my job. My mind spun out of control, and I couldn't concentrate. My boss told me to take more time off, but I realised what was happening - I'd lost myself when I realised my driving was being removed. I quickly went private to see a consultant in Edinburgh and I managed to get my DVLA tests done to prove I could drive. The consultant was really nice and offered his services under the NHS if I needed an operation. Anyway, I found myself again, and was allowed to continue working 5 days! I don't think that the Dumfries eye consultant really understood the impact of everything on patients. In the cities, people don't worry about being an individual person. In the rural areas, you are dependent upon others about every single thing that you try to do. What next? Moving from eye patch to prisms. The optometrist gave me a 20-degree prism that meant that I could drive with full vision. I started using these stuck onto the specs. The eye consultant told me not to buy any prescribed specs as this cost a lot of money. However, I did need to fiddle around with specs and stick on things while at work. I could see stuff that was close but needed the prism for presentations. I needed to move to a lower prism for driving, and I couldn't get an appointment. This was scary, but someone helped me find an ophthalmic optician who could help. It did cost me £200 but this - basically - gave me my life back! I could wear varifocal glasses that worked all the time! This meant that I did not have to appear as if "not normal" while at work! Really, quite illuminating. Around that time, people started saying I looked great. Why? Well, I really don't know. I don't know why I didn't eat as much, but presume that my stomach had shrunk while I was unconscious. I just don't eat in the same way. Before I was ill, I'd stopped measuring my weight after 14 1/2 stones, so possibly more? I wore a size 18 and found everything difficult. Now, I have lost about 1/3 of my weight, and I'm a size 10. Scary! I need to make sure I drop any further. I need to stop needing to buy more clothes. I may be stabilising at 10 stone. Anyway, I have to say that I was 10 stone about twenty years ago, and in those days it was a size 12! Food-wise, we eat mostly lemon/vinegar/fresh-tasting, which means that I like eating. I don't worry about stodginess. So, what is left? Well, I still struggled with the telephone. I needed to start looking for a new job when my contract was ending. I intended a meeting as Skype for a job interview, but it failed on the day we used. I tried to use the telephone, and it was *dreadful*. I should not have agreed - BIG MISTAKE. I ended up crying and crying with ultimate failure. This part is scary and causes me to cry when I think about it. This is where I get thrown into "am I normal?" vs "am I a failure?" situation. Horrible. However, I pushed myself into some other activities, running meetings outside of work (train companies) and ending up in local newspapers. When realising I was coping with a public meeting, I remembered that I had *always* been a bit rubbish in those situations, and therefore, for me, I was actually "normal". David Mundell MP was there, and he was actually worse than me! Quite funny. There are no jobs. I think this is really IR35 rules impacting all contract people, followed by the coronavirus. I don't think it really should be anything to do with me. Honestly, I should be able to work normally. I did have a great interview for a job in Dublin - done by telephone, where I asked for Skype, and was due for another meeting. Of course, it's on hold. I doubt the role will reappear, but they were all great. I've no idea where I will eventually end up working. Without the ability, I really hate myself, as I'd continue to feel "getting better". We are all in a difficult time. My husband had put his own problems to the side last year. Last year he was due to get his hip replacement in January, but it was delayed into March. On the day of his operation, he checked in and had pen marks on his hip. Then the consultant arrived and said it would be cancelled for weeks. Such a shame! We don't know when this will happen. If only I hadn't been so ill, he wouldn't have to have all of this now. The delays caused issues, which ended me up in the hospital. I had been terrified about signs that could have been a stroke! The doctor saw something on the scan, and I stayed in the whole weekend to be tested the following Monday. I think they the person who looked at the scan didn't realise the issue was a year old. The consultant decided that I had a migraine! This correlated with my stressful situation. My migraines have changed from the old-style aura to be a scary set of symptoms. I'm so relieved that it is really nothing to worry about! I must learn the new signs in a different way from before. Am I depressed? I filled in a form and assumed I had severe depression; however, my doctor didn't believe it - he thinks I just need a job! Maybe that's right - I just need to be working - but that's easier than done right now. Also, yesterday I realised that I must be being hit by something physical. I had stopped using HRT (menopausal) while in the hospital. My sister, who helped save me, she subsequently stopped HRT because she had a cancerous tumour (leiomyosarcoma) that had been removed, and that had been propelled by HRT. So maybe my hormones are all a bit rubbish right now. I will try and chat with the GP about that too. On the telephone! Anyway, why am I so late? I'm terrible. Not nearly as proactive as I used to be, where I remembered everything all the time. I need to force myself with calendars and timetables, and I need to write everything down. I sometimes wonder about some musicians who were also affected: Karl Wallinger, Edwyn Collins, Neil Young. This week was 30 years since World Party's Goodbye Jumbo album (no. 1 in Q magazine). I saw the band playing in 2015, and I was so pleased to see Karl Wallinger after his SAH in 2001. He was fantastic! Was he ever on the forum? I would love to ask Karl - he is due to issue this new album, first since 2000 - which is soon. I so want to hear the new album - my favourite! When is soon? A bit like me?
  11. Congratulations Jean! Thank you so much for all your stories so far. It's great to hear you continue to improve in 3 years Fiona x
  12. Matt, it can take quite a time. I'm amazed that after a year I'm still getting better. I still have panic days when I feel like a fraud, wondering if there's nothing or if I'm useless. Friends can say it's amazing I'm still here. Suzanne & Marobinson71, good to meet both of you. That is some story about being in ICU with COVID! You can't be a fraud or you wouldn't have been in there though - very lucky to get out.
  13. No, I don’t have anything. I might ask for something if I have it again, but it’s not essential. I’m so happy it’s not so scary. Funnily enough, I had a full day in the bed - no wonder I had so much sleep!
  14. PHEW! It’s not! It’s a migraine! I think the CT scan was read wrongly that night, just the old stuff from last year. The consultant asked lots of questions and concluded with a migraine. I’ve had plenty migraines with aura in the past, but nothing like this: unbalanced vision, can’t speak, numbness down my face & side. This can also be a migraine!
  15. Thanks. They think there is a TIA on the initial scan and are going to do more testing tomorrow. Someone mentioned me staying on meds for the rest of my life.
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