SockFiddler
New Member
- Relationship to Diabetes
- Type 2
Heya, lovely people,
It's been 24 hours since my diagnosis of T2 diabetes and I'm still not sure how I feel about it. This is probably because of a number of reasons:
1. I have a disabled (autism and sensory issues) child who is going through transition to a new school. This is a Big Deal as, after several local Autism Resource Bases failed (utterly) to meet his needs, we're now trying an out-of-locality residential school. So I'm coming to terms with that while getting him ready to, essentially, move out of home at 11.
2. I'm obsessed about information. Knowledge (in my experience) defeats fear and informs decisions. And there's a lot of information out there, but some of it's conflicting, some of it makes no sense to me and all of it seems completely overwhelming.
3. The sheer inevitability of it all. It's been so clear to me that this is where I've been headed for some time, and I'm absolutely furious that my constant cries for help, support, input, ideas have been ignored (more on this later, though I'm trying to think about how to not rant senselessly about it)
4. I just don't have time for a Big Personal Moment of Introspection. You know the ones, you read about them all the time in the media: "... and that was the moment I realised my life had changed forever". I despise drama - there's no need for it and it just makes everything that much more complicated.
5. I have so little time to spend researching and thinking about this. And I'm frustrated that this has happened now as opposed to in several months' time when - hopefully - I'll have more time to look after myself.
Sorry. Lists.
I've tried to write "My Story" several times, but it's long, rambly and personal and that's not how I want to introduce myself (as opposed to annoyed, tired and fighty - ell oh ell). But I feel if I write "Bad back - can't exercise. Busy life - can't take this all in" it will just sound like I'm someone who is incredibly lazy and lives by her excuses.
And that's really not the case.
I have severe spinal stenosis (the "up-down" type, so my spinal cord is left largely alone and it's the nerve roots that get compressed) which has been getting steadily worse over the last 3 or so years. Now I have to "walk" with 2 sticks. I can get maybe 30 steps before my legs go numb. If I carry on trying to walk, my legs turn to jelly and I fall. And the more I push, the longer it'll take for my legs to regain their sensation. It's vile. It's completely limiting. It's something the doctors have been dealing with by telling me to lose weight (like I'm some kind of idiot who hasn't figured out that her weight is too high without such powerful, qualified insight).
The "how" of losing weight has always eluded me: I'm a full-time parent carer on benefits parenting an extremely challenging child who has been excluded from not one but two specialist resource bases because they failed to come to terms with his many sensory issues. These sensory issues include - naturally - many problems with food. It wasn't so bad to produce stodgy meals (the only texture he'll eat without issue) night after night when I was walking everywhere and working, but in my post-kidney existence, that diet piled on the pounds.
Because of his complicated food issues - and my tiny benefits income - it's just not possible to cook two separate meals every night. For a start, I can't afford it. But also I simply don't have the energy in the evenings. If I'm still awake at 7pm it's because I found some time to sleep between 1 and 5pm.
The tiredness has been a real issue, and - again - it's been passed off over the years as "of course you're tired - you're a carer" and "get some exercise, it'll do you the world of good!" to "Join Slimming World and count your calories" (because I so totally have time for that and people who are able to look after my son while I go out in the evening are ten-a-penny). Eventually, one GP looked back over the many blood tests I'd had done and discovered that I'd been severely anaemic for almost 3 years.
Fabulous.
There's also the stress, which is killer but which I concentrate and work hard on managing - and that loops back to the information obsession. Learning to understand my son was the tip of the iceberg, really. Learning to advocate his needs to others was a real battle, too. Then there's the learning to deal with people - professionals - not listening, dismissing me as "just a parent" and so on.
When my son's school place (his name is Euan - I don't know why I've not said that yet. Sorry) broke down in January, there was no plan in place to support us at home. This was a situation where two specialist school, each with their resources, equipment, training, funding, staffing and experience had said they couldn't cope, and their solution was to send him home to his mum who, in comparison, had 11 years of parenting and an Early Bird course under her belt.
Instead of a plan, we ended up with hospital education (which was withdrawn after he attacked me for the first time in March) and then a plan to get him out of the house and into residential school (not just during term time but all the time - it's called a "52 Week Timetable") as quickly as possible. I said all the way back in October when it was clear that the school place was untenable that I was feeling pressure to put Euan into a residential school (which everyone denied, of course), but I've been very clearly steered in that direction.
At this moment in time, I've fought and won several very big battles and countless little ones and Euan has started his transition to a lovely, little private resource base not far from the city, where he'll be attending for 38 weeks / year, home on the weekend and school holidays.
Sorry. I know it doesn't sound strictly relevant, but it is. It all is, and (I'm sorry) in writing all this out it's helping me to process my thoughts and feelings which, it turns out, can mostly be described as "fury" and "frustration".
You see, people like to give advice like "You need to take care of you!" because it makes them feel like they're being magnanimous and kind and empathetic, but the truth is that if you don't truly understand the life of the person you're talking to - the things that stop them making their own wellbeing a priority - then you're just making someone feel like c**p for no reason.
And that's pretty much where I am. I've been asking for help and predicting diabetes (or similar) for years. And the advice and "support" I've received in return has pretty much solidly made me feel like c**p. To the point where I'm now reluctant to tell anyone in my life that I have this diagnosis because I just can't take another session of eye-rolling and well-intentioned advice. Or, worse, the "well we all saw that coming" type of shaming that everyone can live without.
And the truth is, nothing in my life has changed or let up. My back hasn't suddenly straightened out because I need to start an exercise regime, my benefits haven't suddenly increased to allow me to afford two separate sets of food and Euan's sensory issues aren't suddenly desperate to eat fruits and vegetables. At the moment of my diagnosis, I didn't suddenly gain 3 unmolested hours to my day where I can sit and process and research and plan for this, nor did I get any kind of inspirational epiphany where, suddenly, I was struck with the notion that "This is the first day of the rest of my life!"
In all honesty, I feel more marginalised and isolated than ever. I feel absolutely overwhelmed by the task of having to fit all this new diabetes stuff into an already over-full, over-stressful day. I feel so, so angry that no-one had my back for such a long time. I'm normally the sunniest, cheeriest person in the room but, holy bananas, this has had me beat for a full 24 hours.
I just don't know what to do with this information. I don't know how to start processing it in a way that will lead to positive changes that I recognise (and have recognised for a long, long time) I need to make. I read the letter in the "Useful Links" section and felt so helpless and unable to see how to fit any of that into my life that I burst into tears.
I'm sorry. I don't really do low ebbs very often. And it's not often that I'm presented with a situation that I can't process and research my way out of. I had hoped that joining this forum and reaching out to your lovely community would be a positive first step, but I'm not so sure now - I think it's all still too new and raw, and I'm too angry and bewildered.
I'll post this for posterity, but will try to write a more positive introduction (because I can't think of anything else to say for this one, and "write intro in forum" is on my list of things to do) when my mind has cleared a bit.
Many thanks if you managed to read this far - I'm sorry for ranting.
Sock x
It's been 24 hours since my diagnosis of T2 diabetes and I'm still not sure how I feel about it. This is probably because of a number of reasons:
1. I have a disabled (autism and sensory issues) child who is going through transition to a new school. This is a Big Deal as, after several local Autism Resource Bases failed (utterly) to meet his needs, we're now trying an out-of-locality residential school. So I'm coming to terms with that while getting him ready to, essentially, move out of home at 11.
2. I'm obsessed about information. Knowledge (in my experience) defeats fear and informs decisions. And there's a lot of information out there, but some of it's conflicting, some of it makes no sense to me and all of it seems completely overwhelming.
3. The sheer inevitability of it all. It's been so clear to me that this is where I've been headed for some time, and I'm absolutely furious that my constant cries for help, support, input, ideas have been ignored (more on this later, though I'm trying to think about how to not rant senselessly about it)
4. I just don't have time for a Big Personal Moment of Introspection. You know the ones, you read about them all the time in the media: "... and that was the moment I realised my life had changed forever". I despise drama - there's no need for it and it just makes everything that much more complicated.
5. I have so little time to spend researching and thinking about this. And I'm frustrated that this has happened now as opposed to in several months' time when - hopefully - I'll have more time to look after myself.
Sorry. Lists.
I've tried to write "My Story" several times, but it's long, rambly and personal and that's not how I want to introduce myself (as opposed to annoyed, tired and fighty - ell oh ell). But I feel if I write "Bad back - can't exercise. Busy life - can't take this all in" it will just sound like I'm someone who is incredibly lazy and lives by her excuses.
And that's really not the case.
I have severe spinal stenosis (the "up-down" type, so my spinal cord is left largely alone and it's the nerve roots that get compressed) which has been getting steadily worse over the last 3 or so years. Now I have to "walk" with 2 sticks. I can get maybe 30 steps before my legs go numb. If I carry on trying to walk, my legs turn to jelly and I fall. And the more I push, the longer it'll take for my legs to regain their sensation. It's vile. It's completely limiting. It's something the doctors have been dealing with by telling me to lose weight (like I'm some kind of idiot who hasn't figured out that her weight is too high without such powerful, qualified insight).
The "how" of losing weight has always eluded me: I'm a full-time parent carer on benefits parenting an extremely challenging child who has been excluded from not one but two specialist resource bases because they failed to come to terms with his many sensory issues. These sensory issues include - naturally - many problems with food. It wasn't so bad to produce stodgy meals (the only texture he'll eat without issue) night after night when I was walking everywhere and working, but in my post-kidney existence, that diet piled on the pounds.
Because of his complicated food issues - and my tiny benefits income - it's just not possible to cook two separate meals every night. For a start, I can't afford it. But also I simply don't have the energy in the evenings. If I'm still awake at 7pm it's because I found some time to sleep between 1 and 5pm.
The tiredness has been a real issue, and - again - it's been passed off over the years as "of course you're tired - you're a carer" and "get some exercise, it'll do you the world of good!" to "Join Slimming World and count your calories" (because I so totally have time for that and people who are able to look after my son while I go out in the evening are ten-a-penny). Eventually, one GP looked back over the many blood tests I'd had done and discovered that I'd been severely anaemic for almost 3 years.
Fabulous.
There's also the stress, which is killer but which I concentrate and work hard on managing - and that loops back to the information obsession. Learning to understand my son was the tip of the iceberg, really. Learning to advocate his needs to others was a real battle, too. Then there's the learning to deal with people - professionals - not listening, dismissing me as "just a parent" and so on.
When my son's school place (his name is Euan - I don't know why I've not said that yet. Sorry) broke down in January, there was no plan in place to support us at home. This was a situation where two specialist school, each with their resources, equipment, training, funding, staffing and experience had said they couldn't cope, and their solution was to send him home to his mum who, in comparison, had 11 years of parenting and an Early Bird course under her belt.
Instead of a plan, we ended up with hospital education (which was withdrawn after he attacked me for the first time in March) and then a plan to get him out of the house and into residential school (not just during term time but all the time - it's called a "52 Week Timetable") as quickly as possible. I said all the way back in October when it was clear that the school place was untenable that I was feeling pressure to put Euan into a residential school (which everyone denied, of course), but I've been very clearly steered in that direction.
At this moment in time, I've fought and won several very big battles and countless little ones and Euan has started his transition to a lovely, little private resource base not far from the city, where he'll be attending for 38 weeks / year, home on the weekend and school holidays.
Sorry. I know it doesn't sound strictly relevant, but it is. It all is, and (I'm sorry) in writing all this out it's helping me to process my thoughts and feelings which, it turns out, can mostly be described as "fury" and "frustration".
You see, people like to give advice like "You need to take care of you!" because it makes them feel like they're being magnanimous and kind and empathetic, but the truth is that if you don't truly understand the life of the person you're talking to - the things that stop them making their own wellbeing a priority - then you're just making someone feel like c**p for no reason.
And that's pretty much where I am. I've been asking for help and predicting diabetes (or similar) for years. And the advice and "support" I've received in return has pretty much solidly made me feel like c**p. To the point where I'm now reluctant to tell anyone in my life that I have this diagnosis because I just can't take another session of eye-rolling and well-intentioned advice. Or, worse, the "well we all saw that coming" type of shaming that everyone can live without.
And the truth is, nothing in my life has changed or let up. My back hasn't suddenly straightened out because I need to start an exercise regime, my benefits haven't suddenly increased to allow me to afford two separate sets of food and Euan's sensory issues aren't suddenly desperate to eat fruits and vegetables. At the moment of my diagnosis, I didn't suddenly gain 3 unmolested hours to my day where I can sit and process and research and plan for this, nor did I get any kind of inspirational epiphany where, suddenly, I was struck with the notion that "This is the first day of the rest of my life!"
In all honesty, I feel more marginalised and isolated than ever. I feel absolutely overwhelmed by the task of having to fit all this new diabetes stuff into an already over-full, over-stressful day. I feel so, so angry that no-one had my back for such a long time. I'm normally the sunniest, cheeriest person in the room but, holy bananas, this has had me beat for a full 24 hours.
I just don't know what to do with this information. I don't know how to start processing it in a way that will lead to positive changes that I recognise (and have recognised for a long, long time) I need to make. I read the letter in the "Useful Links" section and felt so helpless and unable to see how to fit any of that into my life that I burst into tears.
I'm sorry. I don't really do low ebbs very often. And it's not often that I'm presented with a situation that I can't process and research my way out of. I had hoped that joining this forum and reaching out to your lovely community would be a positive first step, but I'm not so sure now - I think it's all still too new and raw, and I'm too angry and bewildered.
I'll post this for posterity, but will try to write a more positive introduction (because I can't think of anything else to say for this one, and "write intro in forum" is on my list of things to do) when my mind has cleared a bit.
Many thanks if you managed to read this far - I'm sorry for ranting.
Sock x
