I was so chuffed with myself at the beginning of the month because chronic fatigue keeps on slamming doors shut in my face and increasingly reducing my world to virtually nothing and I was beginning to think another door was in the process of shutting last month.
My constant struggle to get out to the monthly meeting of the writing group yet again took its toll in September when I had distressing and uncomfortable symptoms all the way out, all through the session and pretty much all the way back - and then had the usual being ill and unable to do very much for 4 days afterwards. I really had to weigh up the value of the group (which I love) against what it was doing to me and how unwell it was making me.
But this had further repercussions.
If I couldn't make it to Banchory (an hour away) and often felt unwell driving to and from Nikki's (half an hour away), did that mean I wasn't going to be able to get to Inverness (3 hours away and where a lot of my family live) under my own steam any more? And if I can't even cope with those journeys then how the hell am I proposing to travel to Italy by myself for a whole week??!
I hear your thoughts - why don't I take public transport? And I think this might be a difficult one to explain.
When the symptoms kick in, there's something about the more control I have over the situation, the better it pans out. If I'm in the car, I can stop for a bit and shut my eyes or turn and head home. If I'm with people I trust and feel safe with (and who believe in the illness), that also helps. As does projecting - if I know I only have the next hour (or whatever) to get through then can get home, that helps too. On public transport, I'm not in control and there are are threatening situations all around which could derail me (no pun intended) in this state. Buses/trains might night not come, might break down, might be delayed etc. I would feel more vulnerable feeling ill in that situation.
However I have given both of them a go and both didn't work. A couple of years ago I hitched a lift up to Inverness with my brother and his wife one Sunday then took the train back.
It was a nightmare.
The symptoms kicked in about half way home but I could do nothing about it - frequent trips to the toilets were awful as it was in an absolutely disgusting mess and had some dubious characters hanging around and there was also a group of rowdy revellers in the same carriage as me who had smuggled in alcohol and were getting progressively drunker as the journey went on. On reaching Aberdeen I then had to wait in a long queue for a taxi and was accosted by a drunk behind me the whole time - to the extent I gave him my taxi just to get rid of him and feel safe!
All that would have just been annoying in other circumstances and I would have chalked it down to experience but coping with these symptoms as well made it hell on earth and I can't risk it happening again. Same story with the a bus journey I took recently when the car was in getting its MOT done. (I don't mean there were drunks on the bus otherwise you'll be thinking we're all a bunch of alcoholics over here - just that it was an equally horrible experience).
So when my nephew, Malcolm, got in touch on our group family chat to say him and his mum, my sister-in-law, Jenny, were planning a short trip up to the north of Scotland on the 5th of the month, I got a little nervous as to whether I'd be able to go.
Bit of backstory. Jenny is 68, lives in London with my brother, Mike, and has recently been diagnosed with pancreatic cancer. As I understand it, it's incurable and they're delaying chemo at the moment because her tumour hasn't grown and because she's very unfit, has lost a good bit of weight and they think it will send her downhill even further if she has it. I've been stressing recently about being able to go and see her before it gets any worse - again it seemed impossible that I could ever get as far as London on my own.
She was brought up in Sri Lanka (then Ceylon) but moved to London with her family as a young girl, met Mike when he was living there in the swinging sixties, they married and had two boys, Arran and Malcolm. Arran lives in New York with his wife, Melissa, toddler son Oscar and baby number two is currently on the way, due in December. Malcolm went out to Sri Lanka on holiday years ago and never came back - he set up and runs a very successful restaurant and accommodation business out there and is single.
Malcolm came over to stay with Mike and Jenny for a few weeks to take the pressure off Mike who has had his own health problems over the last couple of years, dealing with recovering from a triple bypass just over a year ago and resulting complications. He also has a millstone of a small lighting business in St. Albans hanging round his neck which he's been trying to get rid of for ages due to increasing rent, the recession and staffing problems.
As we say up here - they haven't had their troubles to seek lately.
So this trip wasn't just a 'normal' family trip - it had the potential of possibly being the last time I would get to see Jenny if she got worse - so you can understand my desperation to get there. I therefore gave a big sigh of relief when Nikki said she wanted to go as well with the kids and we made plans to head off on Sunday lunchtime. (That might still mean I would be driving depending on how tired she was but at least I had backup).
Then on Saturday Nikki realised Lily had a drama rehearsal on Sunday afternoon - this is to practise for their annual show in March next year and the teacher is very adamant about the kids attending every rehearsal. I panicked a bit but a few hours later she said Monday was possible (Malcolm and Jenny were there until Tuesday), she would just take Lily out of school at lunchtime and we could head on up after that.
Another big sigh of relief.
Until 11 p.m. that night when I got a text from her saying her friend Tracy had just asked her to pick up her daughter, Emily, from school on Monday so that was it - according to her we were out of options.
Another bit of backstory - Tracy is going through IVF just now and had to go up to hospital on the Monday for the next stage in the process - she still thought Nikki was going up to Inverness on the Sunday and because she's been keeping the whole IVF thing hush-hush for obvious reasons, Nikki didn't want to let her down. But the group of them who pal about together (about 4 of them) all know about it - all are mums and have kids at the school and her family all stays locally - plus her mum and dad stay in the next village and she has 4 sisters. Therefore I'm sure there could have been possible alternatives had she known about Nikki's change of plans.
So I'm afraid that didn't cut it for me.
Anyway I slept sketchily on Saturday night and was a ball of stress on Sunday morning worrying about it so decided to just get in the car and go. Packed stuff for overnight just in case I needed it (Marina and Steven, my niece and her husband, run a guesthouse in Inverness - they'd closed for the season but had got all the rooms ready in case Jenny needed to 'escape the madding crowd' at any point so I knew there would be an available room for me if need be), put out extra food for Bailey and got on the road at half past 1. I didn't tell anyone except Nikki in case I didn't make it.
And it was fine!
Employed various strategies which may or may not have helped get through the journey on the way up, arrived around 4 and found them all at Marina's. And delighted to see me :) We all decamped to Lorna's (my sister) for food shortly after (she stays 10 minutes away) and I set off back again just after 7 - employed the same strategies and had an uneventful journey back. The symptoms did kick in just after I got to Lorna's but I took some codeine tablets which sometimes works and was ok. The last hour of the journey was a bit hairy but still manageable.
There's a particular point you come to on the way there where you round a corner and suddenly there's the Kessock Bridge in the distance, connecting civilisation to the neighbouring Black Isle with the lights of Inverness itself round to the left. I sometimes tear up when I round that corner. To me it just feels like I'm 'back home'. There's not an easy place to stop and take a photo though (as I'm fast realising having spent a good half hour searching the Internet for an image to portray it!) - however as I was leaving Inverness that night I did manage to stop and get a shot but it's too far away to be any good on my crappy (old) phone camera so it's here just to give you an idea.
The next day I woke up warily but was fine - played table tennis for an hour and a half then did a shop in Asda, Tesco and squeezed in The Range as well, even having enough energy for a soak in the bath before bed :) Well pleased with all of that!
And then I opened the post which I was too tired to open when I got back on Sunday. Just as well. It was a letter from the Department of Work and Pensions (our Benefits place) saying they'd overpaid me for over a year and could I please give them back £3,000 (3,665.73 US dollars, 4,883.32 Canadian dollars, 5,446.85 Australian dollars) forthwith!!
I felt physically sick as I read it. This was the money (all £73.10 a week of it!) which I'd fought for at the Tribunal in February and which I was guaranteed to get until September 2020 - it meant I didn't have to worry about paying the mortgage any more and relieved a lot of stress for me. But as well as that, I'm already in the process of having to go to another Tribunal because I'm appealing their decision not to pay me PIP (Personal Independence Payment which replaced the old Disability Allowance) for which I have to amass as much evidence from health professionals and anyone else as possible so I already have enough stress on the go with that.
I'm just exhausted fighting this stuff and I was just so pleased with Sunday, not just getting there and seeing Jenny, but the wider implications of being able to do that journey and then it all got spoiled as soon as I opened their stupid letter.
I had also been saving madly for a year for the Italian holiday but that'll have to go by the board now if I have to pay this money back. I honestly think I'll have to wait until I'm 66 and getting my government pension so that I know for sure what's coming in before I can think about going away at all because I just can't rely on or trust that bunch of shysters in the slightest. Meanwhile Nikki has babies and has literally hundreds of pounds thrown at her (you knew that was coming didn't you :) For which she has to do zilch. Well apart from the having babies thing.
And the reason? They're saying I didn't tell them about my paltry work pension of £60 a week (which started in September 2018 after my 60th birthday). Except I did. I went into the JobCentre on two separate occasions with bank statements and my pension certificate and got everything confirmed and uploaded as far as I know. I've written a letter to them with a copy of the original form I sent them telling them about the change in circumstances but I know fine they'll just say they never got it. It's my word against theirs.
So sick of this stuff.
BUT - when I came to write it all out on here I realised I still have so much to be thankful for - namely:
(1) I have enough savings that I can produce the money just now if necessary (it's just going to impact big time on the years I have to survive until I can claim my pension).
(2) I don’t need to go to Italy anytime soon - it would have been nice as a belated 60th celebration but I can wait.
(3) I’m not dealing with terminal cancer and all the horrors that brings.
(4) I’m not about to be made homeless.
(5) I don’t need to turn to drugs to get me through the week.
(6) I have 3 gorgeous grandchildren only 30 minutes drive away and can still see them often even with this illness.
(7) I can still get up to my home town which is a pretty little place with city centre views like this:
(8) I bought a shiny new red iPhone XR before I got the letter (thank goodness).
So there’s that :)
And just to finish how about a cute video of Ruari who has discovered the delights of pussycats - and Ivy who has discovered the patience needed when receiving loves from a 7 month old :)
My constant struggle to get out to the monthly meeting of the writing group yet again took its toll in September when I had distressing and uncomfortable symptoms all the way out, all through the session and pretty much all the way back - and then had the usual being ill and unable to do very much for 4 days afterwards. I really had to weigh up the value of the group (which I love) against what it was doing to me and how unwell it was making me.
But this had further repercussions.
If I couldn't make it to Banchory (an hour away) and often felt unwell driving to and from Nikki's (half an hour away), did that mean I wasn't going to be able to get to Inverness (3 hours away and where a lot of my family live) under my own steam any more? And if I can't even cope with those journeys then how the hell am I proposing to travel to Italy by myself for a whole week??!
I hear your thoughts - why don't I take public transport? And I think this might be a difficult one to explain.
When the symptoms kick in, there's something about the more control I have over the situation, the better it pans out. If I'm in the car, I can stop for a bit and shut my eyes or turn and head home. If I'm with people I trust and feel safe with (and who believe in the illness), that also helps. As does projecting - if I know I only have the next hour (or whatever) to get through then can get home, that helps too. On public transport, I'm not in control and there are are threatening situations all around which could derail me (no pun intended) in this state. Buses/trains might night not come, might break down, might be delayed etc. I would feel more vulnerable feeling ill in that situation.
However I have given both of them a go and both didn't work. A couple of years ago I hitched a lift up to Inverness with my brother and his wife one Sunday then took the train back.
It was a nightmare.
The symptoms kicked in about half way home but I could do nothing about it - frequent trips to the toilets were awful as it was in an absolutely disgusting mess and had some dubious characters hanging around and there was also a group of rowdy revellers in the same carriage as me who had smuggled in alcohol and were getting progressively drunker as the journey went on. On reaching Aberdeen I then had to wait in a long queue for a taxi and was accosted by a drunk behind me the whole time - to the extent I gave him my taxi just to get rid of him and feel safe!
All that would have just been annoying in other circumstances and I would have chalked it down to experience but coping with these symptoms as well made it hell on earth and I can't risk it happening again. Same story with the a bus journey I took recently when the car was in getting its MOT done. (I don't mean there were drunks on the bus otherwise you'll be thinking we're all a bunch of alcoholics over here - just that it was an equally horrible experience).
So when my nephew, Malcolm, got in touch on our group family chat to say him and his mum, my sister-in-law, Jenny, were planning a short trip up to the north of Scotland on the 5th of the month, I got a little nervous as to whether I'd be able to go.
Bit of backstory. Jenny is 68, lives in London with my brother, Mike, and has recently been diagnosed with pancreatic cancer. As I understand it, it's incurable and they're delaying chemo at the moment because her tumour hasn't grown and because she's very unfit, has lost a good bit of weight and they think it will send her downhill even further if she has it. I've been stressing recently about being able to go and see her before it gets any worse - again it seemed impossible that I could ever get as far as London on my own.
She was brought up in Sri Lanka (then Ceylon) but moved to London with her family as a young girl, met Mike when he was living there in the swinging sixties, they married and had two boys, Arran and Malcolm. Arran lives in New York with his wife, Melissa, toddler son Oscar and baby number two is currently on the way, due in December. Malcolm went out to Sri Lanka on holiday years ago and never came back - he set up and runs a very successful restaurant and accommodation business out there and is single.
Malcolm came over to stay with Mike and Jenny for a few weeks to take the pressure off Mike who has had his own health problems over the last couple of years, dealing with recovering from a triple bypass just over a year ago and resulting complications. He also has a millstone of a small lighting business in St. Albans hanging round his neck which he's been trying to get rid of for ages due to increasing rent, the recession and staffing problems.
As we say up here - they haven't had their troubles to seek lately.
So this trip wasn't just a 'normal' family trip - it had the potential of possibly being the last time I would get to see Jenny if she got worse - so you can understand my desperation to get there. I therefore gave a big sigh of relief when Nikki said she wanted to go as well with the kids and we made plans to head off on Sunday lunchtime. (That might still mean I would be driving depending on how tired she was but at least I had backup).
Then on Saturday Nikki realised Lily had a drama rehearsal on Sunday afternoon - this is to practise for their annual show in March next year and the teacher is very adamant about the kids attending every rehearsal. I panicked a bit but a few hours later she said Monday was possible (Malcolm and Jenny were there until Tuesday), she would just take Lily out of school at lunchtime and we could head on up after that.
Another big sigh of relief.
Until 11 p.m. that night when I got a text from her saying her friend Tracy had just asked her to pick up her daughter, Emily, from school on Monday so that was it - according to her we were out of options.
Another bit of backstory - Tracy is going through IVF just now and had to go up to hospital on the Monday for the next stage in the process - she still thought Nikki was going up to Inverness on the Sunday and because she's been keeping the whole IVF thing hush-hush for obvious reasons, Nikki didn't want to let her down. But the group of them who pal about together (about 4 of them) all know about it - all are mums and have kids at the school and her family all stays locally - plus her mum and dad stay in the next village and she has 4 sisters. Therefore I'm sure there could have been possible alternatives had she known about Nikki's change of plans.
So I'm afraid that didn't cut it for me.
Anyway I slept sketchily on Saturday night and was a ball of stress on Sunday morning worrying about it so decided to just get in the car and go. Packed stuff for overnight just in case I needed it (Marina and Steven, my niece and her husband, run a guesthouse in Inverness - they'd closed for the season but had got all the rooms ready in case Jenny needed to 'escape the madding crowd' at any point so I knew there would be an available room for me if need be), put out extra food for Bailey and got on the road at half past 1. I didn't tell anyone except Nikki in case I didn't make it.
And it was fine!
Employed various strategies which may or may not have helped get through the journey on the way up, arrived around 4 and found them all at Marina's. And delighted to see me :) We all decamped to Lorna's (my sister) for food shortly after (she stays 10 minutes away) and I set off back again just after 7 - employed the same strategies and had an uneventful journey back. The symptoms did kick in just after I got to Lorna's but I took some codeine tablets which sometimes works and was ok. The last hour of the journey was a bit hairy but still manageable.
There's a particular point you come to on the way there where you round a corner and suddenly there's the Kessock Bridge in the distance, connecting civilisation to the neighbouring Black Isle with the lights of Inverness itself round to the left. I sometimes tear up when I round that corner. To me it just feels like I'm 'back home'. There's not an easy place to stop and take a photo though (as I'm fast realising having spent a good half hour searching the Internet for an image to portray it!) - however as I was leaving Inverness that night I did manage to stop and get a shot but it's too far away to be any good on my crappy (old) phone camera so it's here just to give you an idea.
The next day I woke up warily but was fine - played table tennis for an hour and a half then did a shop in Asda, Tesco and squeezed in The Range as well, even having enough energy for a soak in the bath before bed :) Well pleased with all of that!
And then I opened the post which I was too tired to open when I got back on Sunday. Just as well. It was a letter from the Department of Work and Pensions (our Benefits place) saying they'd overpaid me for over a year and could I please give them back £3,000 (3,665.73 US dollars, 4,883.32 Canadian dollars, 5,446.85 Australian dollars) forthwith!!
I felt physically sick as I read it. This was the money (all £73.10 a week of it!) which I'd fought for at the Tribunal in February and which I was guaranteed to get until September 2020 - it meant I didn't have to worry about paying the mortgage any more and relieved a lot of stress for me. But as well as that, I'm already in the process of having to go to another Tribunal because I'm appealing their decision not to pay me PIP (Personal Independence Payment which replaced the old Disability Allowance) for which I have to amass as much evidence from health professionals and anyone else as possible so I already have enough stress on the go with that.
I'm just exhausted fighting this stuff and I was just so pleased with Sunday, not just getting there and seeing Jenny, but the wider implications of being able to do that journey and then it all got spoiled as soon as I opened their stupid letter.
I had also been saving madly for a year for the Italian holiday but that'll have to go by the board now if I have to pay this money back. I honestly think I'll have to wait until I'm 66 and getting my government pension so that I know for sure what's coming in before I can think about going away at all because I just can't rely on or trust that bunch of shysters in the slightest. Meanwhile Nikki has babies and has literally hundreds of pounds thrown at her (you knew that was coming didn't you :) For which she has to do zilch. Well apart from the having babies thing.
And the reason? They're saying I didn't tell them about my paltry work pension of £60 a week (which started in September 2018 after my 60th birthday). Except I did. I went into the JobCentre on two separate occasions with bank statements and my pension certificate and got everything confirmed and uploaded as far as I know. I've written a letter to them with a copy of the original form I sent them telling them about the change in circumstances but I know fine they'll just say they never got it. It's my word against theirs.
So sick of this stuff.
BUT - when I came to write it all out on here I realised I still have so much to be thankful for - namely:
(1) I have enough savings that I can produce the money just now if necessary (it's just going to impact big time on the years I have to survive until I can claim my pension).
(2) I don’t need to go to Italy anytime soon - it would have been nice as a belated 60th celebration but I can wait.
(3) I’m not dealing with terminal cancer and all the horrors that brings.
(4) I’m not about to be made homeless.
(5) I don’t need to turn to drugs to get me through the week.
(6) I have 3 gorgeous grandchildren only 30 minutes drive away and can still see them often even with this illness.
(7) I can still get up to my home town which is a pretty little place with city centre views like this:
(8) I bought a shiny new red iPhone XR before I got the letter (thank goodness).
So there’s that :)
And just to finish how about a cute video of Ruari who has discovered the delights of pussycats - and Ivy who has discovered the patience needed when receiving loves from a 7 month old :)
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