I've had a pretty rough month.
Turns out I haven't got the medication sussed after all.
The doc did prescribe me 14 Diazepam 2mg tablets and made it clear I wouldn't get any more. Given that I was taking 2 and sometimes 3 before going anywhere that obviously wasn't enough - even if I was just using them for counselling and nothing else. So I did a lot of research and discovered I could buy them online from what seemed to be a reputable vendor - which was actually a lot easier than I thought it would be - I was imagining having to try and get into the Dark Web and all sorts but I found a site set up for folk similar to myself - who need that sort of medication but can't get it prescribed. As well as all sorts of discussion around medication they have reviews of vendors and post results of what's been bought, how much it was, how long it took to come and how genuine it was. And one vendor seemed to stand out. I had several e-mail exchanges with him and felt I could trust him.
I had to set up a Moneygram account though to make the transaction and because I was struggling so much just to get through each day so had to concentrate on everyday living instead, I never got round to it. In the meantime I had two occasions where the Diazepam didn't seem to work. One of them was a counselling session and the hardest 50 minutes I've had to endure in a long time. Just the fear when I sat down of realising the symptoms hadn't died down and not knowing how bad they would get was enough to initiate panic but then when I made some input into the session, they all flared up again. That had never happened before and really threw me.
I was washing the client's cup up afterwards and the kitchen is opposite the manager's office. She always has the door open and saw me so asked how I was. She could see by my face that things weren't good so asked me in and we had a chat. Christine has known me for years and was instrumental in getting me back into counselling - she was involved in my original training in the year 2000 and then was the one who suggested the training course I took last year. She was also one of the trainers delivering it. She's so understanding and totally gets that I'm desperately trying to hang onto this no matter the sacrifice will be and wants to support me in that. But that whole 50 minutes had felt like some sort of endurance test and I wasn't sure I could go through another session like it. She said not to make any decisions that day and see how I was the following week but the following week I wasn't any better and I ended up cancelling the second session. I realised I could have tried a higher dose of Diazepam but that actually doesn't sit right with me. Lots of people take far higher daily doses of that drug or some other anti-anxiety drug but taking 8 mgs of Diazepam just to get me out of the door just made me recoil and I wasn't prepared to do it.
It also hadn't worked when I had gone to Inverness - or at least it had worked slightly - but not enough to let me enjoy the day - and it made me incredibly sleepy when I was driving - the last 20 miles of that journey on the way up were a nightmare and I had to stop and walk around a couple of times to try and keep awake. That's never happened before either.
And yet I look perfectly okay in this photo (I'm second on the left from the bottom of the table).
This is the maddening thing. I never look ill. But that whole day was awful from start to finish and although I was glad that I managed up to see them because that's probably the last time Margaret will be over in Scotland, I'm not sure if I paid too heavy a price for it. I was in bed the whole of the next day, fit for nothing. And the dreadful anxiety symptoms persisted for another 2 weeks afterwards although of course I have no evidence to say driving up there made anything any worse. (Ian & Margaret happened to be through visiting Matt that day so left in their car 10 minutes after I did to give me a 'back-up' should it be needed on the journey!).
It was lovely to see the relationship between Jamie and his aunt (Jamie is sitting next to me and Margaret (Canadian Margaret) is right across the table from him) - there was a lot of banter between the two of them and he took great care of her throughout the whole trip. At home (in Canada), Margaret was well looked after by her aunt Anne (never married or had children) up until she died and then others in the family took over after that and she stays in a kind of supported living sort of place which allows her to still have some independence. She's 76 now but was looking not too different from when she was over to Scotland in the mid-seventies! And she was so loving - very taken with wee Jessie (being held by her Dad at the top of the table) - couldn't take her eyes off her and kept giving me a hug saying she was so glad to see me. I wasn't entirely sure she knew exactly who I was but she just seemed so delighted to be able to see so many family while they were here. It was just a 2 week trip and fairly well spaced out - any longer would have been too much for her - but at each point - London, Glasgow, Inverness, there was a cousin ready and waiting to take them in and show them round or ferry them up to more family.
And they were delighted to be able to go even further up north to see where their original descendants had lived. My Dad's mum and dad lived in a little place called Tain in Easter Ross, on what's called the Black Isle in the north of Scotland, given that name because of its predominantly dark, brooding image and also because snow doesn't lie there in winter so it always retains the dark colour. It's full of tiny little villages and it's where my Dad and his brothers and sisters were brought up. For years this was the only way to get across to it -
but now there's a spanking new bridge which has made a huge difference to the tourist industry up there. As well as employment.
Lorna, my sister, knows all the particular houses where everyone lived and has all the local knowledge so her and Jane went off up with Jamie & Margaret after we had our meal (about a half hour/hour's drive so we were hoping Margaret would have a nap in the car on the way to keep her going). When Granda (Dad's dad) was a young man, before he met Granny, him and his three brothers emigrated over to Canada but Granda came back - not sure why (he probably fell out with someone - he was as thrawn as they come!) - and created his brood in Scotland. Another brother came back to England but two remained in Canada and so we have quite a few relatives over there. I've only been over once back in the eighties but Jane (bottom right in the restaurant photo) - my cousin - has been really good at updating a very comprehensive family tree so that we can keep track of who's who. Goodness knows where she gets the time as she manages Capercaillie, a Scottish traditional band and also Eddi Reader, a traditional Scottish singer/songwriter, full time, as well as rents out two flats in Glasgow so has all the upkeep of that plus her own flat. Mind you she's not married, with no partner and no kids so maybe that explains it!
Anyway I'm glad I got up there but not sure it did me any good long-term.
Last week and this things have been slightly better - and the really distressing symptoms seem to have died down a little so I'm managing on an extra Subutex tablet if I have to go anywhere and haven't needed any Diazepam since the 1st June. However I have no idea why the month was so bad and I have no idea why last week was any better - I have absolutely no clue how my body is functioning these days and that's frightening. I'm sure diet probably plays a part but have no idea what food - if anything - is making things better or worse. And when the exhaustion takes over it's so hard to eat properly. I can't think of anything healthy I can have in the bedroom apart from cereal bars - I even wondered about those meal replacement drinks - Ensure/Complan and the like but I'd like to try and avoid that if I can. Plus I presume you need a kettle of water to pour onto the mixture?
I've ordered B12 oil as I've heard a deficiency of that can cause very low energy and fatigue so it's worth trying. There's very definitely something wrong - that much I'm sure of and have been sure of for a long time. And I've discovered a place a few miles away which takes a holistic approach to health and one of the things they deal with is chronic conditions. So they would go down the homeopathy route I think - I'm hoping that means they might be well experienced in deficiencies and what vitamins and supplements to take to correct them. A referral from the doctor gets you half a dozen appointments with them initially - thereafter you have to pay but the charges aren't extortionate and at this point I would pay anything to get some of my life back.
One of the keys I think is to get properly tested. The basic blood tests the doctors do only tests for certain things and I never know exactly what they show - you're only told 'nothing has shown up' - I would rather know what was tested and what the actual results were. I've been trying to research adrenal fatigue because it seems to fit my symptoms almost to a tee - and apparently it's something easily missed by GPs and often confused with other illnesses - and testing for cortisol levels (which I think is the main test) is not covered in basic tests and needs to be done over a period of time as levels change so much during the course of a day. So there are usually four different tests done at four different times of the day. But I need someone who knows what they're doing to talk to about this. What worries me is that it has 4 stages but if it's left untreated, by the time you get to the fourth stage, it's basically too late and treatment doesn't work because the body is so depleted by that time. And also when my symptoms were so awful that horrible month, I couldn't get anywhere to be able to be treated so that frightened me as well. So many people who are in more severe stages of this illness have just been abandoned - sometimes even by family and friends - left to stare at walls from their beds, unable even to read because they're so exhausted. What chance do they have?
Nikki sent me this photo of the girls in matching outfits to try to cheer me up. It did bring a smile to my face I have to admit.
I discovered she had a Netflix account but didn't use it very much so wondered if I could tap into it. Found out I could if we upgraded her to the next plan so as it was only £1.50 extra, I just set up a Standing Order to pay that into her account each month then I'll monitor usage and see how much I'm actually using it. As you can imagine, being stuck in bed so much, I watch the iPad A LOT but there are lots of sites where you can watch stuff free if you know how to navigate them and can put up with occasional downtime or buffering so that's why I've never joined Amazon or Netflix before.
I've just finished a series called 'The Keepers' - about the cover up involved in the murder of Cathy Cesnik and 2 of her high school students (now in their sixties) who have tirelessly and continuously persisted in trying to get to the bottom of it. Can totally recommend it but it involves sexual abuse just to warn you in case that's a trigger for anyone. Anyway a lot of it centres on the slowly-being-recovered memories of one of the abuse survivors and when asked how it affects her life now, she answered "I live life small." So much was encapsulated in those 4 words and the phrase really stuck with me - presumably because it struck a chord with my own situation. Not for one second am I connecting what I've been through to what she's been through - God no - but I could very much connect with that description. That is exactly how I am living my life right now - small. Not that I ever lived life particularly large or anything but I'll settle for the medium I had previously :)
And there are bright spots in all this misery - family times which are sustaining me - so I will write about them in the coming weeks and try and be more positive. I know I feel worse today because I had a sleepless night last night (since the illness hit I've had occasional nights of completely missed sleep - not one wink) and next door are having fences/decking built so workmen have been banging away since 8 o'clock this morning (radio blaring and drills drilling) meaning I can't catch up with naps so that's not helping because I was hoping to go and watch Lily at her swimming lesson at 5 p.m.
And I knew I had a horrible job to do today so that was depressing me as well but it's now done. I e-mailed Christine (counselling agency manager) to say I need to get my client re-allocated again because I just can't see how I can commit to 10 weeks of sessions with all this rubbish going on, never knowing how I'm going to be from one day to the next. The fact I seem a bit better this week makes me tempted to keep going but I could easily have another month like the one just past and I'd rather the client got mucked about at the beginning than be half-way through and have to do it because I have to keep cancelling or something. That just felt like another nail in the coffin though.
I hate this illness right now. Absolutely hate it. But hate is an energy so maybe I can use it to try to get to the bottom of what's going on.
Turns out I haven't got the medication sussed after all.
The doc did prescribe me 14 Diazepam 2mg tablets and made it clear I wouldn't get any more. Given that I was taking 2 and sometimes 3 before going anywhere that obviously wasn't enough - even if I was just using them for counselling and nothing else. So I did a lot of research and discovered I could buy them online from what seemed to be a reputable vendor - which was actually a lot easier than I thought it would be - I was imagining having to try and get into the Dark Web and all sorts but I found a site set up for folk similar to myself - who need that sort of medication but can't get it prescribed. As well as all sorts of discussion around medication they have reviews of vendors and post results of what's been bought, how much it was, how long it took to come and how genuine it was. And one vendor seemed to stand out. I had several e-mail exchanges with him and felt I could trust him.
I had to set up a Moneygram account though to make the transaction and because I was struggling so much just to get through each day so had to concentrate on everyday living instead, I never got round to it. In the meantime I had two occasions where the Diazepam didn't seem to work. One of them was a counselling session and the hardest 50 minutes I've had to endure in a long time. Just the fear when I sat down of realising the symptoms hadn't died down and not knowing how bad they would get was enough to initiate panic but then when I made some input into the session, they all flared up again. That had never happened before and really threw me.
I was washing the client's cup up afterwards and the kitchen is opposite the manager's office. She always has the door open and saw me so asked how I was. She could see by my face that things weren't good so asked me in and we had a chat. Christine has known me for years and was instrumental in getting me back into counselling - she was involved in my original training in the year 2000 and then was the one who suggested the training course I took last year. She was also one of the trainers delivering it. She's so understanding and totally gets that I'm desperately trying to hang onto this no matter the sacrifice will be and wants to support me in that. But that whole 50 minutes had felt like some sort of endurance test and I wasn't sure I could go through another session like it. She said not to make any decisions that day and see how I was the following week but the following week I wasn't any better and I ended up cancelling the second session. I realised I could have tried a higher dose of Diazepam but that actually doesn't sit right with me. Lots of people take far higher daily doses of that drug or some other anti-anxiety drug but taking 8 mgs of Diazepam just to get me out of the door just made me recoil and I wasn't prepared to do it.
It also hadn't worked when I had gone to Inverness - or at least it had worked slightly - but not enough to let me enjoy the day - and it made me incredibly sleepy when I was driving - the last 20 miles of that journey on the way up were a nightmare and I had to stop and walk around a couple of times to try and keep awake. That's never happened before either.
And yet I look perfectly okay in this photo (I'm second on the left from the bottom of the table).
This is the maddening thing. I never look ill. But that whole day was awful from start to finish and although I was glad that I managed up to see them because that's probably the last time Margaret will be over in Scotland, I'm not sure if I paid too heavy a price for it. I was in bed the whole of the next day, fit for nothing. And the dreadful anxiety symptoms persisted for another 2 weeks afterwards although of course I have no evidence to say driving up there made anything any worse. (Ian & Margaret happened to be through visiting Matt that day so left in their car 10 minutes after I did to give me a 'back-up' should it be needed on the journey!).
It was lovely to see the relationship between Jamie and his aunt (Jamie is sitting next to me and Margaret (Canadian Margaret) is right across the table from him) - there was a lot of banter between the two of them and he took great care of her throughout the whole trip. At home (in Canada), Margaret was well looked after by her aunt Anne (never married or had children) up until she died and then others in the family took over after that and she stays in a kind of supported living sort of place which allows her to still have some independence. She's 76 now but was looking not too different from when she was over to Scotland in the mid-seventies! And she was so loving - very taken with wee Jessie (being held by her Dad at the top of the table) - couldn't take her eyes off her and kept giving me a hug saying she was so glad to see me. I wasn't entirely sure she knew exactly who I was but she just seemed so delighted to be able to see so many family while they were here. It was just a 2 week trip and fairly well spaced out - any longer would have been too much for her - but at each point - London, Glasgow, Inverness, there was a cousin ready and waiting to take them in and show them round or ferry them up to more family.
And they were delighted to be able to go even further up north to see where their original descendants had lived. My Dad's mum and dad lived in a little place called Tain in Easter Ross, on what's called the Black Isle in the north of Scotland, given that name because of its predominantly dark, brooding image and also because snow doesn't lie there in winter so it always retains the dark colour. It's full of tiny little villages and it's where my Dad and his brothers and sisters were brought up. For years this was the only way to get across to it -
but now there's a spanking new bridge which has made a huge difference to the tourist industry up there. As well as employment.
Lorna, my sister, knows all the particular houses where everyone lived and has all the local knowledge so her and Jane went off up with Jamie & Margaret after we had our meal (about a half hour/hour's drive so we were hoping Margaret would have a nap in the car on the way to keep her going). When Granda (Dad's dad) was a young man, before he met Granny, him and his three brothers emigrated over to Canada but Granda came back - not sure why (he probably fell out with someone - he was as thrawn as they come!) - and created his brood in Scotland. Another brother came back to England but two remained in Canada and so we have quite a few relatives over there. I've only been over once back in the eighties but Jane (bottom right in the restaurant photo) - my cousin - has been really good at updating a very comprehensive family tree so that we can keep track of who's who. Goodness knows where she gets the time as she manages Capercaillie, a Scottish traditional band and also Eddi Reader, a traditional Scottish singer/songwriter, full time, as well as rents out two flats in Glasgow so has all the upkeep of that plus her own flat. Mind you she's not married, with no partner and no kids so maybe that explains it!
Anyway I'm glad I got up there but not sure it did me any good long-term.
Last week and this things have been slightly better - and the really distressing symptoms seem to have died down a little so I'm managing on an extra Subutex tablet if I have to go anywhere and haven't needed any Diazepam since the 1st June. However I have no idea why the month was so bad and I have no idea why last week was any better - I have absolutely no clue how my body is functioning these days and that's frightening. I'm sure diet probably plays a part but have no idea what food - if anything - is making things better or worse. And when the exhaustion takes over it's so hard to eat properly. I can't think of anything healthy I can have in the bedroom apart from cereal bars - I even wondered about those meal replacement drinks - Ensure/Complan and the like but I'd like to try and avoid that if I can. Plus I presume you need a kettle of water to pour onto the mixture?
I've ordered B12 oil as I've heard a deficiency of that can cause very low energy and fatigue so it's worth trying. There's very definitely something wrong - that much I'm sure of and have been sure of for a long time. And I've discovered a place a few miles away which takes a holistic approach to health and one of the things they deal with is chronic conditions. So they would go down the homeopathy route I think - I'm hoping that means they might be well experienced in deficiencies and what vitamins and supplements to take to correct them. A referral from the doctor gets you half a dozen appointments with them initially - thereafter you have to pay but the charges aren't extortionate and at this point I would pay anything to get some of my life back.
One of the keys I think is to get properly tested. The basic blood tests the doctors do only tests for certain things and I never know exactly what they show - you're only told 'nothing has shown up' - I would rather know what was tested and what the actual results were. I've been trying to research adrenal fatigue because it seems to fit my symptoms almost to a tee - and apparently it's something easily missed by GPs and often confused with other illnesses - and testing for cortisol levels (which I think is the main test) is not covered in basic tests and needs to be done over a period of time as levels change so much during the course of a day. So there are usually four different tests done at four different times of the day. But I need someone who knows what they're doing to talk to about this. What worries me is that it has 4 stages but if it's left untreated, by the time you get to the fourth stage, it's basically too late and treatment doesn't work because the body is so depleted by that time. And also when my symptoms were so awful that horrible month, I couldn't get anywhere to be able to be treated so that frightened me as well. So many people who are in more severe stages of this illness have just been abandoned - sometimes even by family and friends - left to stare at walls from their beds, unable even to read because they're so exhausted. What chance do they have?
Nikki sent me this photo of the girls in matching outfits to try to cheer me up. It did bring a smile to my face I have to admit.
I discovered she had a Netflix account but didn't use it very much so wondered if I could tap into it. Found out I could if we upgraded her to the next plan so as it was only £1.50 extra, I just set up a Standing Order to pay that into her account each month then I'll monitor usage and see how much I'm actually using it. As you can imagine, being stuck in bed so much, I watch the iPad A LOT but there are lots of sites where you can watch stuff free if you know how to navigate them and can put up with occasional downtime or buffering so that's why I've never joined Amazon or Netflix before.
I've just finished a series called 'The Keepers' - about the cover up involved in the murder of Cathy Cesnik and 2 of her high school students (now in their sixties) who have tirelessly and continuously persisted in trying to get to the bottom of it. Can totally recommend it but it involves sexual abuse just to warn you in case that's a trigger for anyone. Anyway a lot of it centres on the slowly-being-recovered memories of one of the abuse survivors and when asked how it affects her life now, she answered "I live life small." So much was encapsulated in those 4 words and the phrase really stuck with me - presumably because it struck a chord with my own situation. Not for one second am I connecting what I've been through to what she's been through - God no - but I could very much connect with that description. That is exactly how I am living my life right now - small. Not that I ever lived life particularly large or anything but I'll settle for the medium I had previously :)
And there are bright spots in all this misery - family times which are sustaining me - so I will write about them in the coming weeks and try and be more positive. I know I feel worse today because I had a sleepless night last night (since the illness hit I've had occasional nights of completely missed sleep - not one wink) and next door are having fences/decking built so workmen have been banging away since 8 o'clock this morning (radio blaring and drills drilling) meaning I can't catch up with naps so that's not helping because I was hoping to go and watch Lily at her swimming lesson at 5 p.m.
And I knew I had a horrible job to do today so that was depressing me as well but it's now done. I e-mailed Christine (counselling agency manager) to say I need to get my client re-allocated again because I just can't see how I can commit to 10 weeks of sessions with all this rubbish going on, never knowing how I'm going to be from one day to the next. The fact I seem a bit better this week makes me tempted to keep going but I could easily have another month like the one just past and I'd rather the client got mucked about at the beginning than be half-way through and have to do it because I have to keep cancelling or something. That just felt like another nail in the coffin though.
I hate this illness right now. Absolutely hate it. But hate is an energy so maybe I can use it to try to get to the bottom of what's going on.
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