Last Thursday Asthma UK published a new report on severe asthma, and more specifically about the discrimination faced by many with severe asthma and their specific needs. The report is called Fighting for Breath and you can read it here. It's an important document because so little is understood by the general population about severe asthma, so anything that highlights the condition is a good thing. With this need for publicity in mind, Asthma UK put out a call for people with severe asthma to contact them if they'd be willing to help the cause. I responded to this call, was then asked to tell them a little more about my 'story', and consequently they phoned me, and asked if I'd be willing to speak to the media. They'd sent out a press release to various places around the country and in the north east they'd had responses of interested from BBC Look North (local TV news programme), BBC Radio Newcastle, and BBC Radio Teeside. At first I wasn't all that keen about doing TV as I'm so self-conscious about my weight, but I had to remind myself that the cause is the important thing, so I put my insecurities aside and agreed to do both the TV and radio programmes. Radio Teeside never got back to me, but I was on the 'Alfie and Charlie at Breakfast' show on BBC Radio Newcastle at 8.25am on Thursday, and on BBC Look North on the 6.30pm programme. I have to say that the Alfie and Charlie at Breakfast programme was rather early for me, so unbeknown to the listeners I did the phone interview lying in bed in my pyjamas. Tee hee hee. I think it went okay for the most part, although I kept losing my train of thought and at the end I kind of petered out, but I think I got over what I wanted to say ... mostly. Mind you, it would've been helpful if they'd kept to the questions they'd said they were going to ask me and had sent me on Wednesday. It was, however, helpful to think through all they asked in these questions, and I was able to incorporate some of my thoughts on these into answers to the questions they ended up asking me.
At 10.30am on Thursday the reporter/interviewer from BBC Look North came round. Joanne was lovely and helped me to relax and lose some of my nervousness. We started off with a chat about my asthma, how it effects me, experiences in hospital, how my daily life is effected, my need for carers, the rubbishness of the benefits system and their lack of understanding of severe asthma and my experience of that (I had an horrendous experience with the benefits system a few years ago). She then set up the camera, sat behind it and asked me some of the same questions again while the film was rolling. That was a bit weird, because my response then wasn't spontaneous so oddly wasn't as coherent as first time round. Overall it went okay though, and in the final cut they had some of what I said as voice over as they showed me around the house, because after we'd done the interview bit Joanne spent a while getting visual shots without sound. We went into my bedroom first and she filmed me opening my drawer of medicines by my bed, taking out the box of prednisolone and popping three of the tablets onto the bedside cabinet. Then she wanted a shot of me using my nebuliser, but as I'd already had my morning dose she was afraid that if I put any medication into it then I'd overdose (I thought this was quite amusing given how much salbutamol I have when I'm ill, and I was aptly having a fairly rubbish morning with my lungs too) so we didn't actually run the nebuliser - I just put the mask on and sat there looking at the machine ;o) After that, Joanne wanted some film of me using my wheelchair so I spent a while going in and out of the flat as she filmed from different angles. When she was behind me she saw the stickers I've put on the back of Taz (electric wheelchair), one of which says, 'Chaos. Panic. Disorder. My work here is done.' The other says, '0-60 in 15 minutes.' She liked them a lot, filmed them and they ended up on the telly, as did Zach (the cat) because she took a liking to him >^..^< Tee hee. When I was outside she wanted me to run my fingers through the fresh herbs and then pick some of the basil. She took a while filming this and I was a little anxious that I was going to end up with no basil plant left ;o) Thankfully there was plenty left, but I also had plenty to go with my tomatoes and mozzarella for lunch :o) So that was pretty much it, and an hour after Joanne had arrived she went as she had to have a snippet back for the lunchtime programme at 1.30pm, with the longer version ready for 6.30pm. It was awful seeing myself on telly, and watching it I couldn't really concentrate on what was being said, but I think it was okay...
While my carers were here on Thursday and I was in the bath I missed a call from a guy in the Look North news room, but he left a message and I got back to him this morning. He'd had a call from a company in Harrogate - EnviroVent - who'd seen me on the telly. They make air filter machines that are supposed to combat humidity, condensation, dampness, and ultimately dust mites, and they think that their products might help me, so they're offering to install one of their machines into my flat for free! Apparently it usually costs around £800!! This is an amazingly generous offer of them, and anything that has potential to help has to be tried, so I've jumped at the chance. Of course, EnviroVent want some publicity, which is likely foremost in their mind when offering this to me, but that's fine by me. So John from the BBC Look North news room got back in touch with EnviroVent after he'd spoken to me, and within half an hour I had a call from them to talk through it. As I live in a property owned by the council then we may have to get permission to have the machine installed, but since I don't know who to get in touch with then EnviroVent are contacting them on my behalf, and I'll get in touch with the council then if I need to, guided by EnviroVent on who I need to speak to. Apparently EnviroVent have put one of their machines to one side for me, and can fit it almost immediately when they get the go-ahead. The only delaying factor, after the engineer has been to see where would be best to have it, and any other products that might be helpful, is that Look North want to come and film the machine being installed so that they can do a follow-up item. I guess this is dependent upon it being helpful to me, but it could mean that I end up on the telly again, which isn't good for my insecurities, but is brilliant for publicity about severe asthma. Both EnviroVent and John from the news room have told me that the machines are endorsed by Asthma UK and have also had recommendation by some hospitals/NHS Trusts, so this definitely isn't a gimmick or untested. How exciting! Okay, it may not help me, but there's a chance that it might, and it's a very long time since there's been any suggestion of anything that might help.
I'll let you know what happens.
Monday, 19 July 2010
Sunday, 11 July 2010
Ten
It's only ten days until my first cataract removal operation. I'm a little nervous, but I'm also excited at the prospect of being able to see properly again. I was at the garden centre with my mum earlier today (she came down from Edinburgh for the weekend) and I found it very difficult indeed to read the labels on the plants I was looking at. It's all slightly complicated by the Holmes-Adies Pupil in my left eye, because the bright sunlight was blinding me in that eye as it doesn't accommodate, but when I closed that eye to stop the pain, the dazzle, and to protect it I was left with pretty much only peripheral vision in my right eye due to the cataract. Reading doesn't happen very well with no/very little central vision.
When I went for the assessment for surgery with the ophthalmologist they (there were two of them) were very keen that I know that there's a one in two hundred chance of my vision being worse after the cataract removal op, and a one in one thousand chance of losing my vision in that eye all together. Obviously this is a consideration, a slight concern - particularly the possibility of losing vision entirely - but without the op there is absolute certainty that I will go blind, so the decision was a no-brainer. You may remember that originally the ophthalmologist had said that they'd never operate on my cataracts because of my lungs and the risk of anaesthetic complications, even with a local anaaesthetic. I know there are risks, but I had discussed the ophthalmologist's concerns with Dr H (asthma consultant) and he'd reassured me that I ought to be fine with a local anaesthetic, so I was able to pass this on to the ophthalmologists when I saw them for surgery assessment, and was also able to say that Dr H would be happy to discuss things lung-related with them if they wanted. The possibility of this, and the conversation I'd had with Dr H that I was able to tell them about seemed to be enough to reassure them at this time, and they agreed to do the surgery. Well, they agreed that the surgery can happen, but they've made sure that the consultant is going to do it in case of any complications with my asthma. I'm sure there won't be. I'm sure I'll be fine. In fact, that side of things isn't really concerning me at all ... it's the prospect of someone stabbing me in the eye with a sharp knife while I'm awake that's making me apprehensive. I just have to keep focussing on the end result - central vision returned, and most likely better sight in general :o)
I wish I knew how long I'm going to have to wait between the op a week on Wednesday and the same op on my left eye. I'm told that they're usually done in fairly quick succession - two or three weeks - but I don't know for sure. There's going to be an odd time between the ops when my sight it different from how it is now and my glasses prescription is different from what it's going to need to be. There's no point in getting new glasses in that interim period (aside from it being stupidly expensive as well as pointless for such a short time) so I'm not expecting to be able appreciate the full benefits of having the cataracts removed until after both ops have been done and I get new glasses. The other thing is that I wear varifocals and these usually take about a week to get from the opticians, so even after both ops have been done, the second eye has settled after the op, and I've been to the optician to see what my new glasses prescription will be, I've still got a bit of a wait until I can see better. I also doubt that I should drive during this time, which is going to be very restrictive. Still, I will hold on to the longer-term positives.
It all starts ten days from now. The countdown to better vision has begun :o)
When I went for the assessment for surgery with the ophthalmologist they (there were two of them) were very keen that I know that there's a one in two hundred chance of my vision being worse after the cataract removal op, and a one in one thousand chance of losing my vision in that eye all together. Obviously this is a consideration, a slight concern - particularly the possibility of losing vision entirely - but without the op there is absolute certainty that I will go blind, so the decision was a no-brainer. You may remember that originally the ophthalmologist had said that they'd never operate on my cataracts because of my lungs and the risk of anaesthetic complications, even with a local anaaesthetic. I know there are risks, but I had discussed the ophthalmologist's concerns with Dr H (asthma consultant) and he'd reassured me that I ought to be fine with a local anaesthetic, so I was able to pass this on to the ophthalmologists when I saw them for surgery assessment, and was also able to say that Dr H would be happy to discuss things lung-related with them if they wanted. The possibility of this, and the conversation I'd had with Dr H that I was able to tell them about seemed to be enough to reassure them at this time, and they agreed to do the surgery. Well, they agreed that the surgery can happen, but they've made sure that the consultant is going to do it in case of any complications with my asthma. I'm sure there won't be. I'm sure I'll be fine. In fact, that side of things isn't really concerning me at all ... it's the prospect of someone stabbing me in the eye with a sharp knife while I'm awake that's making me apprehensive. I just have to keep focussing on the end result - central vision returned, and most likely better sight in general :o)
I wish I knew how long I'm going to have to wait between the op a week on Wednesday and the same op on my left eye. I'm told that they're usually done in fairly quick succession - two or three weeks - but I don't know for sure. There's going to be an odd time between the ops when my sight it different from how it is now and my glasses prescription is different from what it's going to need to be. There's no point in getting new glasses in that interim period (aside from it being stupidly expensive as well as pointless for such a short time) so I'm not expecting to be able appreciate the full benefits of having the cataracts removed until after both ops have been done and I get new glasses. The other thing is that I wear varifocals and these usually take about a week to get from the opticians, so even after both ops have been done, the second eye has settled after the op, and I've been to the optician to see what my new glasses prescription will be, I've still got a bit of a wait until I can see better. I also doubt that I should drive during this time, which is going to be very restrictive. Still, I will hold on to the longer-term positives.
It all starts ten days from now. The countdown to better vision has begun :o)
Wednesday, 30 June 2010
Next!
At the moment I feel as though I'm spending most of my life sitting in doctors' waiting rooms. As you know, a couple of weeks ago I had an appointment with an ENT consultant to see if they could help with the chronic dizziness and imbalance that I have due to the POTS. They can't. I was only in the room for five minutes max, during which time the consultant seemed rather perplexed as to why I might need his help... He got a little excited when he asked about the tinnitus that I get and as well as it being in my ears it's often in the middle of my head. I know this is also due to the POTS, but suddenly the consultant wanted an MRI scan of my head to check for any anomalies in my brain! I've got an appointment through for this at 6pm this coming Friday. I'm not expecting there to be any problems, and it all seems a bit pointless as I'm sure the tinnitus is being caused by the POTS, and also, that's not why I went to see the ENT doc and I'm no further forward with any management of the dizziness and imbalance. Okay, so neither are related to my ears, but ENT docs deal with people all the time who are dizzy and have rubbish balance because they do have problems with their ears, so surely they must have ways of managing it???
Tomorrow morning I have an appointment with my asthma consultant. There won't be any miracle cures, but I'm hoping there might be some suggestion at least of what's making my lungs so grumpy at the moment. They've never really settled after my last admission and I haven't had a decent night's sleep since I got home. I got a chest infection shortly after coming back home, but I'm pretty sure the antibiotics the GP gave me cleared that up, although I'm still coughing up some nasty stuff (I won't go into detail, which I'm sure you're very pleased about). I dunno, maybe there won't be anything Dr H can suggest tomorrow, after all, it's probably 'just' my lungs being their usual stroppy selves with no discernible reason, but maybe... The other thing I'm hoping for tomorrow is that Dr H will be able to give me some idea of when my portacath op will be. It'd be good to know roughly when it might be so that I can plan the summer a bit, because at the moment I can't really put anything definite in the diary, and I'd like to go up to Edinburgh to some of the book festival at the end of August if possible. Dr H won't be able to give me any exact timing as he won't be doing the op - that's going to be Dr G at RVI - but he may know roughly how long I'll have to wait.
So that's two hospital appointments with consultants and one for a scan. I was also at the General Hospital on Saturday evening, although this was to see the out of hours doctor. I'd seen my GP at the beginning of last week because I had pain in the veins in my right arm and it felt like it was burning inside. It started in my hand and was really tender, and the GP thought that maybe it was vasculitis, but seeing as that morning I'd just taken the last dose of antibiotics for the chest infection she didn't want to immediately give me any more, and I'm already on high dose steroids for the asthma, so she said we'd see how it goes, but told me to go back if it got any worse. Well, it got worse, and while I thought I'd be able to hang on until after the weekend it was getting increasingly painful, and I was starting to get neuropathy in my hand. The pain, inflammation and swelling was also spreading up my arm, so that by Saturday evening it was two thirds of the way up my forearm. A GP friend of mine said that I ought to get it looked at so after a bit of procrastination I phoned the out of hours doctors service to ask for advice, who also thought that the doc should see me. The OOH docs are at the General Hospital, so I was given an appointment for 9pm and I duly took myself up there, where the doc agreed with my GP that he thought it was vasculitis, and seeing as it was now several days since I'd finished the antibiotics I'd for my chest infection and now my arm was getting worse he gave me a prescription for some more antibiotics.
On Monday morning I woke up with conjunctivitis in my right eye, so I then had to get an appointment with one of my GPs. When I phoned up there were no appointments left with any of the docs in the practice so I went on the waiting list in case of any cancellations. I wasn't very hopeful as I was told there were a few people ahead of me on the list, but I did in fact get a call back and got to see the doc in the late afternoon/early evening. He gave me the drops I needed for my eye, but also had a look at my arm and decided that he'd give me a second lot of antibiotics for it to take in addition to the ones the OOH doc had given me. I have to say that I took the opportunity to have a little moan about feeling like I'm physically falling apart at the moment. I wondered if there was any connection between the various decreptitudes, but he said he didn't know, and he didn't suggest trying to find out ... not that I'm sure what 'trying to find out' might entail ... I'd just like all the bits of me that aren't working properly to start working properly, and to keep working properly.
Oh yeah, and I was also at the GP seeing my regular doc on Wednesday or Thursday last week. This at least was a planned appointment - a check on the ivabradine I take for my heart rate. We've gradually been increasing the dose, but we have to do it slowly in case it causes my BP to fall, which wouldn't be good for the vasovagal syncope. Thankfully, this time there wasn't any significant drop in my BP when the doc checked it, although he did get a little excited at being able to hear the increase in my heart rate when I stood up (he was using his stethoscope. It wasn't that he suddenly developed the powers of super-hearing). I'm not convinced this is a good thing as that's what the invabradine is supposed to be helping with... Oh well. Anyway, the meds are now at the dose that Dr N at the falls clinic suggested we aim towards - 7.5mg twice a day. I see Dr N in clinic again next week.
I should get out more ... and not to doctor and hospital appointments. Actually, I have been doing some other things, but a lot of my energies have gone into these various appointments, and again illness and physical decrepitudes seem to be taking over.
Tomorrow morning I have an appointment with my asthma consultant. There won't be any miracle cures, but I'm hoping there might be some suggestion at least of what's making my lungs so grumpy at the moment. They've never really settled after my last admission and I haven't had a decent night's sleep since I got home. I got a chest infection shortly after coming back home, but I'm pretty sure the antibiotics the GP gave me cleared that up, although I'm still coughing up some nasty stuff (I won't go into detail, which I'm sure you're very pleased about). I dunno, maybe there won't be anything Dr H can suggest tomorrow, after all, it's probably 'just' my lungs being their usual stroppy selves with no discernible reason, but maybe... The other thing I'm hoping for tomorrow is that Dr H will be able to give me some idea of when my portacath op will be. It'd be good to know roughly when it might be so that I can plan the summer a bit, because at the moment I can't really put anything definite in the diary, and I'd like to go up to Edinburgh to some of the book festival at the end of August if possible. Dr H won't be able to give me any exact timing as he won't be doing the op - that's going to be Dr G at RVI - but he may know roughly how long I'll have to wait.
So that's two hospital appointments with consultants and one for a scan. I was also at the General Hospital on Saturday evening, although this was to see the out of hours doctor. I'd seen my GP at the beginning of last week because I had pain in the veins in my right arm and it felt like it was burning inside. It started in my hand and was really tender, and the GP thought that maybe it was vasculitis, but seeing as that morning I'd just taken the last dose of antibiotics for the chest infection she didn't want to immediately give me any more, and I'm already on high dose steroids for the asthma, so she said we'd see how it goes, but told me to go back if it got any worse. Well, it got worse, and while I thought I'd be able to hang on until after the weekend it was getting increasingly painful, and I was starting to get neuropathy in my hand. The pain, inflammation and swelling was also spreading up my arm, so that by Saturday evening it was two thirds of the way up my forearm. A GP friend of mine said that I ought to get it looked at so after a bit of procrastination I phoned the out of hours doctors service to ask for advice, who also thought that the doc should see me. The OOH docs are at the General Hospital, so I was given an appointment for 9pm and I duly took myself up there, where the doc agreed with my GP that he thought it was vasculitis, and seeing as it was now several days since I'd finished the antibiotics I'd for my chest infection and now my arm was getting worse he gave me a prescription for some more antibiotics.
On Monday morning I woke up with conjunctivitis in my right eye, so I then had to get an appointment with one of my GPs. When I phoned up there were no appointments left with any of the docs in the practice so I went on the waiting list in case of any cancellations. I wasn't very hopeful as I was told there were a few people ahead of me on the list, but I did in fact get a call back and got to see the doc in the late afternoon/early evening. He gave me the drops I needed for my eye, but also had a look at my arm and decided that he'd give me a second lot of antibiotics for it to take in addition to the ones the OOH doc had given me. I have to say that I took the opportunity to have a little moan about feeling like I'm physically falling apart at the moment. I wondered if there was any connection between the various decreptitudes, but he said he didn't know, and he didn't suggest trying to find out ... not that I'm sure what 'trying to find out' might entail ... I'd just like all the bits of me that aren't working properly to start working properly, and to keep working properly.
Oh yeah, and I was also at the GP seeing my regular doc on Wednesday or Thursday last week. This at least was a planned appointment - a check on the ivabradine I take for my heart rate. We've gradually been increasing the dose, but we have to do it slowly in case it causes my BP to fall, which wouldn't be good for the vasovagal syncope. Thankfully, this time there wasn't any significant drop in my BP when the doc checked it, although he did get a little excited at being able to hear the increase in my heart rate when I stood up (he was using his stethoscope. It wasn't that he suddenly developed the powers of super-hearing). I'm not convinced this is a good thing as that's what the invabradine is supposed to be helping with... Oh well. Anyway, the meds are now at the dose that Dr N at the falls clinic suggested we aim towards - 7.5mg twice a day. I see Dr N in clinic again next week.
I should get out more ... and not to doctor and hospital appointments. Actually, I have been doing some other things, but a lot of my energies have gone into these various appointments, and again illness and physical decrepitudes seem to be taking over.
Monday, 21 June 2010
Bundles of memory
On a few occasions I've mentioned that my father is ill, but I haven't gone any further. I think that maybe now is the time to tell you that he has Alzheimer's. He was diagnosed about three or four years ago and, as is the case with the disease, he's been declining with time. He's not at the very severe end of the spectrum at the moment - he's still essentially himself, but there are significant differences in him and he's certainly not the same person he has been. I think it's hardest for my step-mum who had to take early retirement in order to care for Dad, and of course with this role she is in the situation most of the time with little respite. I try to do what I can, help out when I can, but as my own health has declined it's been increasingly difficult to do this. I hate that. I want to help out. I want to make the most of Dad while there's as much of him there as there is. It's so hard to see him gradually decline, and know that one day he'll disappear.
Dad and my step-mum, B, are moving from Northumberland where they've lived in a very lovely house for several years back to Newcastle. This is partly to be closer to me, but mainly for increased access to services. Whilst the services for people with Alzheimer's seem to be very joined up in Northumberland, the area is so vast that there just aren't the quantity needed, and Dad and B are hoping that things will be better in this respect in the city. They'd been thinking about the possibility of moving just as global finances collapsed so delayed the move until now, and things have progressed very quickly. It took hardly any time for people to become interested in their house and to find a buyer, and equally little time for them to find a house they like, so all being well it'll progress smoothly, all the paperwork will go through quickly and it won't be long until they're living just a couple of miles from me, rather than the 25 or so miles north that they currently live from me.
Of course, one of the nightmare things of any house sale and move is the sorting, endless tidying, rationalising of belongings, and keeping on top of it once it's been done. They've done a huge amount, but one job that hasn't been done is to sort through a massive box of random photos that Dad inherited from his parents when they died. They're pretty much all of family of one kind or another, and mostly in black and white, and yesterday Dad and I started going through them, sorting them, trying to identify who's who and where. We've only made a tiny dint in the enormous pile protruding from the top of the box so we've a long way to go yet, but it's really interesting. Dad's never really told me all that much about his side of the family - Mum has always been much better about passing on family history - but now, as we've been sorting through the photographs little anecdotes have been coming out, and he's been talking about people in the family I'd never heard of. It's taken a bit of coaxing to get some of the stories out of him, not because of any reluctance, but because he kept forgetting what he was talking about or where he was up to, but then every so often he'd get into a bubble of memory and story would come back to him. Sometimes he'd start on one story, get distracted by a fleeting reference to something else and then start on another story. It didn't matter though. It was interesting. It's a lovely thing to be doing. While we were going through the photos we had B's digital dictaphone on so that we could record any little anecdotes. Most of the recording will be irrelevant and boring, but there'll be snippets that are well-worth hearing again and writing down as a more permanent record. One of the last photos we came across last night before we went downstairs for dinner is, we think, of my great-grandmother with my grandmother (nanny) as very young child - perhaps two or three years old. It took us a while to work it out, so we may be wrong, but I think not, and it feels suprisingly exciting.
Then there's a photo of one of Nanny's Irish cousins - one of those family members I hadn't known existed, although I did know that we had an Irish branch to the family tree. Anyway, the thing that struck me about the photo of this smart young man was how much he resembled my younger brother. This brother, C, was actually my cousin when he was born, but my aunt died when C was two years old and we adopted him. His older, half-brother was already living with his father, but he wasn't exactly what could be called a 'responsible' adult and having C grow up under his 'care' wasn't ever considered ... not that K ever showed any interest in adopting C, so far as I know. So yes, my aunt was my dad's sister, my younger brother was my cousin, and he bears a strong resemblence to this distant relative. It's amazing. I've seen a photo of C's Birth-Father, and I was struck then by the resemblence of C to him, and never really considered that C would have such strong resemblence to anyone else in the family (although he obviously has some features of closer relatives), but at first glance at the photo we came across of my grandmother's cousin (what relative is that to me??? I can never work these things out) I immediately saw C's smile. Weird, isn't it?
I really enjoyed going through those photos, and I'm looking forward to doing more. I'm gathering info about my own family history. I'm discovering the existence of people I never knew existed. I'm seeing resemblences where I never expected to see any. I'm finding out about my dad and his life, and soaking it all up before the memories disappear along with his brain function.
Dad and my step-mum, B, are moving from Northumberland where they've lived in a very lovely house for several years back to Newcastle. This is partly to be closer to me, but mainly for increased access to services. Whilst the services for people with Alzheimer's seem to be very joined up in Northumberland, the area is so vast that there just aren't the quantity needed, and Dad and B are hoping that things will be better in this respect in the city. They'd been thinking about the possibility of moving just as global finances collapsed so delayed the move until now, and things have progressed very quickly. It took hardly any time for people to become interested in their house and to find a buyer, and equally little time for them to find a house they like, so all being well it'll progress smoothly, all the paperwork will go through quickly and it won't be long until they're living just a couple of miles from me, rather than the 25 or so miles north that they currently live from me.
Of course, one of the nightmare things of any house sale and move is the sorting, endless tidying, rationalising of belongings, and keeping on top of it once it's been done. They've done a huge amount, but one job that hasn't been done is to sort through a massive box of random photos that Dad inherited from his parents when they died. They're pretty much all of family of one kind or another, and mostly in black and white, and yesterday Dad and I started going through them, sorting them, trying to identify who's who and where. We've only made a tiny dint in the enormous pile protruding from the top of the box so we've a long way to go yet, but it's really interesting. Dad's never really told me all that much about his side of the family - Mum has always been much better about passing on family history - but now, as we've been sorting through the photographs little anecdotes have been coming out, and he's been talking about people in the family I'd never heard of. It's taken a bit of coaxing to get some of the stories out of him, not because of any reluctance, but because he kept forgetting what he was talking about or where he was up to, but then every so often he'd get into a bubble of memory and story would come back to him. Sometimes he'd start on one story, get distracted by a fleeting reference to something else and then start on another story. It didn't matter though. It was interesting. It's a lovely thing to be doing. While we were going through the photos we had B's digital dictaphone on so that we could record any little anecdotes. Most of the recording will be irrelevant and boring, but there'll be snippets that are well-worth hearing again and writing down as a more permanent record. One of the last photos we came across last night before we went downstairs for dinner is, we think, of my great-grandmother with my grandmother (nanny) as very young child - perhaps two or three years old. It took us a while to work it out, so we may be wrong, but I think not, and it feels suprisingly exciting.
Then there's a photo of one of Nanny's Irish cousins - one of those family members I hadn't known existed, although I did know that we had an Irish branch to the family tree. Anyway, the thing that struck me about the photo of this smart young man was how much he resembled my younger brother. This brother, C, was actually my cousin when he was born, but my aunt died when C was two years old and we adopted him. His older, half-brother was already living with his father, but he wasn't exactly what could be called a 'responsible' adult and having C grow up under his 'care' wasn't ever considered ... not that K ever showed any interest in adopting C, so far as I know. So yes, my aunt was my dad's sister, my younger brother was my cousin, and he bears a strong resemblence to this distant relative. It's amazing. I've seen a photo of C's Birth-Father, and I was struck then by the resemblence of C to him, and never really considered that C would have such strong resemblence to anyone else in the family (although he obviously has some features of closer relatives), but at first glance at the photo we came across of my grandmother's cousin (what relative is that to me??? I can never work these things out) I immediately saw C's smile. Weird, isn't it?
I really enjoyed going through those photos, and I'm looking forward to doing more. I'm gathering info about my own family history. I'm discovering the existence of people I never knew existed. I'm seeing resemblences where I never expected to see any. I'm finding out about my dad and his life, and soaking it all up before the memories disappear along with his brain function.
Friday, 18 June 2010
Coming together
First of all I'd like to thank Dawn, B and Raven/Missy for their lovely comments of support on my last post. It has meant a lot and I'm truly thankful. Since posting To be honest I've taken on board all advice given, I've given into the tears and I'm actually feeling better for it. I was so scared that if I let the upset come to the surface for any protracted time then it'd consume me and I'd end up in that deep, dark pit of depression again, but no, letting some of it out has released the build up and life is picking up again. It turns out that I was also harbouring a chest infection, which I'm sure was feeding into the emotional misery. I'm still rather peeved that I've picked up a chest infection so soon after coming out of hospital, and when I went to my GP on Monday she was keen to have me readmitted :o( To be fair, this GP is new to the practice, hadn't met me before, and so doesn't know my staying-at-home threshold, but she was concerned enough to offer to pay for a taxi to get me home despite my only living 4 streets away from the surgery! I hate to admit it, but I'd actually driven round because I didn't think I'd manage to walk that far, but this seemed to be something of a relief for the doc. Anyway, I didn't go into hospital, but promised that I would go in if I got any worse. I haven't got worse, but I don't seem to have got a whole lot better either, despite the industrial strength antibiotics :o( I have to go back to one of the other GPs next week anyway for a check on the med for my heart rate (ivabradine), so I'll get my lungs checked again then too ... unless of course I need them seeing to sooner, but I sincerely hope I don't. I'm a bit fed up with all this, and with being so knacked...
When I saw the GP on Monday, I also 'came clean' about feeling low. It was almost a passing comment thing, but she picked up on it and offered to refer me to the practice counsellor. The waiting list is four to six weeks, and seeing as I have an appointment with my psychiatrist on Wednesday I said that I'd wait to see how things go with Dr T next week, but that I'd bear it in mind. And now that I'm picking up a little I don't think I'm going to need it, but it was good to be given the option. It's odd in a way, but I think that being honest with the doc about being down and verging on depression has actually helped to pull me out of it a little ... perhaps because it's not a secret, and secrecy can allow the beast of depression to grow into a savage monster. Reveal the secret and the negative force that feeds the beast is released.
Another thing that was getting to me last week was my vision. I have very little central vision in my right eye now from the cataract, and when I was on the beach last Saturday I was looking around, saw a bird, but then had to close my left eye because the sunlight was hurting it due to the Holmes-Adies Pupil, and the bird disappeared. It was still there, flying above me, but I couldn't see it. Thankfully I have my first cataract removal operation on 21st July so this situation will change, but I'm not looking forward to the actual procedure, so it's a mixed thing. I want to be able to see properly again, but I'm also nervous, even though everyone tells me it's quite a simple op and people they know who've had it done say how brilliant it is. I'm sure it must be normal to be nervous about having it done though, despite its brilliance ... isn't it? Surely it'd be more weird not to be a little anxious...?
I had a call from my social worker a couple of days ago. She's leaving. It's hard to believe that I've had her as my social worker for several years, yet only recently found out that I have a social worker, and now she's leaving. However, she did say that my case will be handed over to someone else and that if/when I need to get in touch with them then I need only phone the disabilities team, so that's positive. The other thing she said was that the increased care package she'd put forward for me has been approved and that it starts next Tuesday. Three times a week someone is going to come in, cook me a meal (and have enough to put in the freezer for other days) and be around while I have a bath as I'm more prone to fainting from the POTS and VS when I get hot from the bath. This is good news, and it'll be helpful, but it's also a very mixed thing to get my head around ... I know it's so that I can maintain independence, but at the same time it's a significant loss of independence ... Does that make sense? I never imagined that at age 36 I'd have a carer coming to my home 4 times a week (I already have a carer come once a week to do my cleaning) ... It's strange how life turns out, isn't it?
I'll get there. I am getting there. Life is coming back to me and I've been enjoying the beautiful song of the blackbird that sings outside in the backlane. I haven't seen it, and I don't remember it from previous years, but this year its musical voice has fed my soul and made me smile, particularly at 3.30am when the night has been long and the bird song begins. Yes, there's still a lot of smile left in me yet :o)
When I saw the GP on Monday, I also 'came clean' about feeling low. It was almost a passing comment thing, but she picked up on it and offered to refer me to the practice counsellor. The waiting list is four to six weeks, and seeing as I have an appointment with my psychiatrist on Wednesday I said that I'd wait to see how things go with Dr T next week, but that I'd bear it in mind. And now that I'm picking up a little I don't think I'm going to need it, but it was good to be given the option. It's odd in a way, but I think that being honest with the doc about being down and verging on depression has actually helped to pull me out of it a little ... perhaps because it's not a secret, and secrecy can allow the beast of depression to grow into a savage monster. Reveal the secret and the negative force that feeds the beast is released.
Another thing that was getting to me last week was my vision. I have very little central vision in my right eye now from the cataract, and when I was on the beach last Saturday I was looking around, saw a bird, but then had to close my left eye because the sunlight was hurting it due to the Holmes-Adies Pupil, and the bird disappeared. It was still there, flying above me, but I couldn't see it. Thankfully I have my first cataract removal operation on 21st July so this situation will change, but I'm not looking forward to the actual procedure, so it's a mixed thing. I want to be able to see properly again, but I'm also nervous, even though everyone tells me it's quite a simple op and people they know who've had it done say how brilliant it is. I'm sure it must be normal to be nervous about having it done though, despite its brilliance ... isn't it? Surely it'd be more weird not to be a little anxious...?
I had a call from my social worker a couple of days ago. She's leaving. It's hard to believe that I've had her as my social worker for several years, yet only recently found out that I have a social worker, and now she's leaving. However, she did say that my case will be handed over to someone else and that if/when I need to get in touch with them then I need only phone the disabilities team, so that's positive. The other thing she said was that the increased care package she'd put forward for me has been approved and that it starts next Tuesday. Three times a week someone is going to come in, cook me a meal (and have enough to put in the freezer for other days) and be around while I have a bath as I'm more prone to fainting from the POTS and VS when I get hot from the bath. This is good news, and it'll be helpful, but it's also a very mixed thing to get my head around ... I know it's so that I can maintain independence, but at the same time it's a significant loss of independence ... Does that make sense? I never imagined that at age 36 I'd have a carer coming to my home 4 times a week (I already have a carer come once a week to do my cleaning) ... It's strange how life turns out, isn't it?
I'll get there. I am getting there. Life is coming back to me and I've been enjoying the beautiful song of the blackbird that sings outside in the backlane. I haven't seen it, and I don't remember it from previous years, but this year its musical voice has fed my soul and made me smile, particularly at 3.30am when the night has been long and the bird song begins. Yes, there's still a lot of smile left in me yet :o)
Saturday, 12 June 2010
To be honest
Sometimes I come out of hospital and fling myself back into life without too much trouble even if it's tiring. Sometimes it's more difficult to get my head around what's happened and it's harder to move on. For some reason this is one of the more challenging times, and I've been quite low since getting home. I don't really know why. I'm tearful though, and I'm not sleeping well, and I'm low. I'm not depressed - I refused to be depressed after fighting it so hard for so many years and finally winning seven years ago - but ... but I'm not coping brilliantly. I don't know why. I don't know why some times are harder than others. I don't know why this time is more difficult than some other times. I don't know why I'm so tearful, but I am.
I went to the beach today, for a short wander along the sand. Usually the rush of the waves and the whipping cool breeze blows holes into any misery I feel, but today the air was muggy, the sand sucked at my feet, the foam of the waves was beery, and I found myself crying as I trudged my way past the surfers. At first I tried to stop the tears, but then it didn't seem to matter. Nobody was interested, and even if they had been, what would it have mattered? It didn't matter. I let the tears come and I hoped that I'd feel better afterwards. I didn't.
Why is it sometimes so hard?
Why is this time harder than some others?
I'm used to the routine of being ill.
I'm used to the routine of the severe attacks.
I know what to expect.
I know that coming through it is not guaranteed.
I still get scared.
I still get worn out by the whole experience.
I still don't know how to deal with the aftermath reliably well.
I phoned my psychiatrist earlier in the week. In the past she's said that I could contact her between appointments if I felt I needed to. This is the first time that I've felt that I've needed to, but I did so I rang. She has no appointments before the one I already have. Fair enough, that's only the week after next, but I could've done with something sooner. I was given the option of speaking to the 'duty worker' so in an attempt to be pro-active in my situation I took them up on the offer. The duty worker turned out to be a CPN. She was nice enough, but obviously didn't have any experience with people who've been in the kind of situation I've just come through. I'm sure she'd have been fine if I were psychotic or something, but reactionally low after a severe asthma attack - not so great. It probably didn't help that I didn't know her, and that she'd called me back early in the morning when I was asleep so was immediately thrown from a much needed slumber into talking about feeling miserable and stressed.
And then I had a call from my social worker. This is a social worker who was apparently allocated to me a few years ago, but I knew nothing about until I asked for a review of care needs late last year and she came out to see me a couple of months ago. That's when I learnt that she/someone has been my social worker for a couple of years. Anyway, she's lovely and since I met her she's really wanted to help and get me all the care I need. She asked to be told whenever I go into hospital and to get the nurses to give her a call if I think I'm going to need any extra support when I get home, even if that's temporary. I didn't call. I didn't think this time was any different from any other time. Not really. She called me. She said she'd had a call from the CPN and they'd expressed concern about me. The thing is, I don't think there's an awful lot that anyone can do. It's that old 'time will heal' thing, isn't it? Time will heal. I'll get my head around it again and I'll come out the other side of this quagmire. It's just that in the meantime I have to wade my way through the mire and keep on pulling my feet out of the quick-sand as they threaten to be sucked in. I won't let them. I can't. Life is too precious to let it be subsumed by dark unhappiness for too long. I just need ... I don't know ... what do I need? ... I need strength. I need to persevere. I need to reach out and find the hand of friendship to help me through. I probably need to let some more of the tears out. And perhaps I need to stop trying to understand why it's hard, and just accept that it is hard, for whatever reason...
... Maybe that reason is as simple as 'because it's frightening' ...
... I try to be brave. I try to get on with it. I try not to wallow in fear ... but sometimes fear follows me and won't go away until I've confronted it. How do you confront a fear that you've survived though? It's a fear of something that's gone, something that's done. How do you face that head-on? It's still following me though, and I think that's what's getting me down, what's making me miserable and tearful, and feeling all those things that are scarily close to depression. I will not let it win. I refuse to get depressed again. Life is for living ... I just need to find a way through. Anyone got a map?
I went to the beach today, for a short wander along the sand. Usually the rush of the waves and the whipping cool breeze blows holes into any misery I feel, but today the air was muggy, the sand sucked at my feet, the foam of the waves was beery, and I found myself crying as I trudged my way past the surfers. At first I tried to stop the tears, but then it didn't seem to matter. Nobody was interested, and even if they had been, what would it have mattered? It didn't matter. I let the tears come and I hoped that I'd feel better afterwards. I didn't.
Why is it sometimes so hard?
Why is this time harder than some others?
I'm used to the routine of being ill.
I'm used to the routine of the severe attacks.
I know what to expect.
I know that coming through it is not guaranteed.
I still get scared.
I still get worn out by the whole experience.
I still don't know how to deal with the aftermath reliably well.
I phoned my psychiatrist earlier in the week. In the past she's said that I could contact her between appointments if I felt I needed to. This is the first time that I've felt that I've needed to, but I did so I rang. She has no appointments before the one I already have. Fair enough, that's only the week after next, but I could've done with something sooner. I was given the option of speaking to the 'duty worker' so in an attempt to be pro-active in my situation I took them up on the offer. The duty worker turned out to be a CPN. She was nice enough, but obviously didn't have any experience with people who've been in the kind of situation I've just come through. I'm sure she'd have been fine if I were psychotic or something, but reactionally low after a severe asthma attack - not so great. It probably didn't help that I didn't know her, and that she'd called me back early in the morning when I was asleep so was immediately thrown from a much needed slumber into talking about feeling miserable and stressed.
And then I had a call from my social worker. This is a social worker who was apparently allocated to me a few years ago, but I knew nothing about until I asked for a review of care needs late last year and she came out to see me a couple of months ago. That's when I learnt that she/someone has been my social worker for a couple of years. Anyway, she's lovely and since I met her she's really wanted to help and get me all the care I need. She asked to be told whenever I go into hospital and to get the nurses to give her a call if I think I'm going to need any extra support when I get home, even if that's temporary. I didn't call. I didn't think this time was any different from any other time. Not really. She called me. She said she'd had a call from the CPN and they'd expressed concern about me. The thing is, I don't think there's an awful lot that anyone can do. It's that old 'time will heal' thing, isn't it? Time will heal. I'll get my head around it again and I'll come out the other side of this quagmire. It's just that in the meantime I have to wade my way through the mire and keep on pulling my feet out of the quick-sand as they threaten to be sucked in. I won't let them. I can't. Life is too precious to let it be subsumed by dark unhappiness for too long. I just need ... I don't know ... what do I need? ... I need strength. I need to persevere. I need to reach out and find the hand of friendship to help me through. I probably need to let some more of the tears out. And perhaps I need to stop trying to understand why it's hard, and just accept that it is hard, for whatever reason...
... Maybe that reason is as simple as 'because it's frightening' ...
... I try to be brave. I try to get on with it. I try not to wallow in fear ... but sometimes fear follows me and won't go away until I've confronted it. How do you confront a fear that you've survived though? It's a fear of something that's gone, something that's done. How do you face that head-on? It's still following me though, and I think that's what's getting me down, what's making me miserable and tearful, and feeling all those things that are scarily close to depression. I will not let it win. I refuse to get depressed again. Life is for living ... I just need to find a way through. Anyone got a map?
Friday, 11 June 2010
Almost a week
That's how long I've been home - almost a week. It's great to be back, and that first breath of fresh air as I left the hospital was so exhilarating. Wonderful.
It's been a strange old time since I got home. A bit of a mix of doing very little and being incredibly busy. The busy bits have mainly been passive busyness - paperwork. Lots of OU paperwork - application for financial assistance for my final course with them (to begin in September) for my undergraduate degree; gathering and sending medical evidence to accompany my extenuating circumstances form for the ECA (short dissertation-type thing) for the course I've just done; final bits of form-filling for my application for Disabled Students Allowance (yes, I'm only just getting round to this now after all these years); and writing a regrettable letter of complaint to the OU about the way in which my request for an extension for my recent course's ECA was dealt with, and the situation it put me in. The OU are usually brilliant in supporting students with disabilities and/or health problems, but in this instance they severely let me down, and their previous record of excellence makes there response this time almost worse. Anyway, it's been a difficult decision to make - to complain - and a difficult letter to write, but it is written and has been sent so now all I can do is wait and see what response I get. I don't want anything for myself, other than an apology, but I think some of their policies need re-evaluating and changing, and that's what I've asked for in my letter. Anyway, I probably ought not to say too much about it until it's been dealt with.
The other thing I've done is finally submit my application for the Postgraduate Certificate in Creative Writing at Newcastle University to start in September. It's been on my to-do list since I had that meeting with the prof at the university in April, but I was rather busy with my OU course and needed to put all my energy and brain power into that. Since my meeting with the prof I've been umming and ahhing about what I needed to write in my personal statement on my application form, because it's a heck of a long time since I've had to sell myself on paper like that and I wasn't sure what to write, but I managed to write it a day or two before I left hospital. The application itself was an online one and not being the most computer-literate person in the world it took me a while to work out all that was necessary to get the page to work and then how to fill in all the bits of the form as it wasn't completely straight forward. I did it though, and by Sunday night my application was winging its way to Newcastle University. Now begins the wait.
Yesterday I had a meeting at the Open University Regional Centre. The OU has its own students association (OUSA), which has regional groups in addition to the online OUSA groups. OUSA in the North has been dormant for a long while, but now there are a couple of us who have decided that we'd like to regenerate it, and this coincided with the North Regional Committee meeting, which is a collaborative meeting between Regional Centre staff, Staff Tutors, Associate Lecturers, the Regional Director, and Students/OUSA representatives. There haven't been any students at recent NRC meetings simply because there hasn't been an active OUSA group in the region, but as students interested in regenerating OUSA in the North, C and I were invited to attend the NRC. It was interesting stuff and interesting to get a little more insight into the running of the OU and the 'hot topics'. I'm slightly disappointed that I've only got involved now as I only have one year left with the OU, but it'll be good to be active and involved while I can, and maybe give students in the North a bit more of a voice. I was knacked after the meeting, but good knacked. Knacked from having done something. Knacked with a kind of invigoration. Stimulation.
And today I've been exhausted and have done very little indeed, which is exactly what I've needed to do. This evening I was going to go to a poetry reading by Paul Durcan but the friend I'd been going to go with isn't too well so couldn't make it. To be honest, I'm glad she's taking care of herself, rather than pushing herself to do too much and ending up more exhausted and ill. We'll meet up another time, and there'll be other events to go to together.
The only thing I have planned for tomorrow is a hospital appointment :o( It's with an ENT consultant. Not that there's anything wrong with my ears, nose, and throat. No, it's to see if they can do anything to help with my chronic dizziness and imbalance. Although it's caused by the POTS and there's nothing ENT can do for that, they have a lot of experience in dealing with dizziness and imbalance, so my GP thought they'd be the people to refer me to for advice if nothing else. It'll be great if they can do something, though I don't know what that something might be, but I'll let you know if they come up with anything.
So there ya go - almost a week. Lots of bits and lots of nothing. Next week is looking busier, but with lots of good things. Stimulated, active, happy exhaustion here I come.
It's been a strange old time since I got home. A bit of a mix of doing very little and being incredibly busy. The busy bits have mainly been passive busyness - paperwork. Lots of OU paperwork - application for financial assistance for my final course with them (to begin in September) for my undergraduate degree; gathering and sending medical evidence to accompany my extenuating circumstances form for the ECA (short dissertation-type thing) for the course I've just done; final bits of form-filling for my application for Disabled Students Allowance (yes, I'm only just getting round to this now after all these years); and writing a regrettable letter of complaint to the OU about the way in which my request for an extension for my recent course's ECA was dealt with, and the situation it put me in. The OU are usually brilliant in supporting students with disabilities and/or health problems, but in this instance they severely let me down, and their previous record of excellence makes there response this time almost worse. Anyway, it's been a difficult decision to make - to complain - and a difficult letter to write, but it is written and has been sent so now all I can do is wait and see what response I get. I don't want anything for myself, other than an apology, but I think some of their policies need re-evaluating and changing, and that's what I've asked for in my letter. Anyway, I probably ought not to say too much about it until it's been dealt with.
The other thing I've done is finally submit my application for the Postgraduate Certificate in Creative Writing at Newcastle University to start in September. It's been on my to-do list since I had that meeting with the prof at the university in April, but I was rather busy with my OU course and needed to put all my energy and brain power into that. Since my meeting with the prof I've been umming and ahhing about what I needed to write in my personal statement on my application form, because it's a heck of a long time since I've had to sell myself on paper like that and I wasn't sure what to write, but I managed to write it a day or two before I left hospital. The application itself was an online one and not being the most computer-literate person in the world it took me a while to work out all that was necessary to get the page to work and then how to fill in all the bits of the form as it wasn't completely straight forward. I did it though, and by Sunday night my application was winging its way to Newcastle University. Now begins the wait.
Yesterday I had a meeting at the Open University Regional Centre. The OU has its own students association (OUSA), which has regional groups in addition to the online OUSA groups. OUSA in the North has been dormant for a long while, but now there are a couple of us who have decided that we'd like to regenerate it, and this coincided with the North Regional Committee meeting, which is a collaborative meeting between Regional Centre staff, Staff Tutors, Associate Lecturers, the Regional Director, and Students/OUSA representatives. There haven't been any students at recent NRC meetings simply because there hasn't been an active OUSA group in the region, but as students interested in regenerating OUSA in the North, C and I were invited to attend the NRC. It was interesting stuff and interesting to get a little more insight into the running of the OU and the 'hot topics'. I'm slightly disappointed that I've only got involved now as I only have one year left with the OU, but it'll be good to be active and involved while I can, and maybe give students in the North a bit more of a voice. I was knacked after the meeting, but good knacked. Knacked from having done something. Knacked with a kind of invigoration. Stimulation.
And today I've been exhausted and have done very little indeed, which is exactly what I've needed to do. This evening I was going to go to a poetry reading by Paul Durcan but the friend I'd been going to go with isn't too well so couldn't make it. To be honest, I'm glad she's taking care of herself, rather than pushing herself to do too much and ending up more exhausted and ill. We'll meet up another time, and there'll be other events to go to together.
The only thing I have planned for tomorrow is a hospital appointment :o( It's with an ENT consultant. Not that there's anything wrong with my ears, nose, and throat. No, it's to see if they can do anything to help with my chronic dizziness and imbalance. Although it's caused by the POTS and there's nothing ENT can do for that, they have a lot of experience in dealing with dizziness and imbalance, so my GP thought they'd be the people to refer me to for advice if nothing else. It'll be great if they can do something, though I don't know what that something might be, but I'll let you know if they come up with anything.
So there ya go - almost a week. Lots of bits and lots of nothing. Next week is looking busier, but with lots of good things. Stimulated, active, happy exhaustion here I come.
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