Now I'm ill and that doesn't help Karen

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So now I’m ill.

My fibromyalgia is so bad, I collapsed yesterday and couldn’t move. I was in so much pain it brought tears to my eyes, I fell over, tore a nail off my toe and bruised my shoulder. I feel completely run down.

I’m still waiting for a ‘carers pre-assessment’ from the council, get no support from Karen’s family (Don’t get me started on her daughter. I so want to say something rude to her!), but do get a lot of platitudes from others… not that any of them have the slightest actual interest in coming to see Karen or offering to do something to help me.

My blood sugars are leaping about all over the place, I have a large crack in my foot which bleeds continually (not good for a diabetic, but no matter what we try, it won’t heal), I have five broken teeth (but have had to cancel 6 dentists appointments due to K being in hospital and now nobody to stay with her while I go) and am thoroughly cheesed off… before i deal with all the phone calls, paperwork and general household stuff.

And yes, I know I should look after myself, but what people don’t seem to appreciate is that there’s nobody to do this stuff but me, and being told to look after myself and actually being able to do it, are two very different things. I spend my life worrying about thing’s, (I;m autistic, we do that) and struggling to find the strength to write (I am.. was a self-published author of over 30 novels) or look after my YouTube channel (which had just started to grow when K was taken ill last year), and whilst I get that they’re not the priority, I just find my life drifting away. That’s nobody’s fault, least of all Karen’s, but just a general observation that when things like this happen, the ‘fallout’ is far wider than people realise. And don’t even get me started on trying to find SORN insurance, because I’m still working on that.

But there’s nothing else to be done other than to take the pills, stop moaning, and get on with life.

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@2Weevils

Do you belong to a carer group?

I think it would be a damn good idea to join one.

By mentioning this I might have set a ball rolling that might get you a pertinent reply.

Weekend isn’t the best time for making contact with charitable groups and Hilary is in bed right now.

Her group is local but is part of a national thing.
I’ll get details to you later this morning, as soon as I can.

I know I’m not alone and I want you to know you are not alone either.

Hang on in there.

Please make sure you rest, recuperate and recover.

That must take priority over all else.

If you ignore me and get hospitalised then that will help no one and simply create two big difficulties out of one.

The First rule of Caring, or Rescue for that matter:

Ensure your own personal safety,

  • Then do what you can, taking no risks.
  • Involve others (Reaching out to the Forum is an example of this)
  • Accept help.
  • You will get through this.

keep on keepin on
:writing_hand: :grinning_face_with_smiling_eyes: :+1:

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..that’s not your failure. That’s a system that has failed you

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@2Weevils

Check out this link:

I hope this is of use. No worries, if it isn’t for you, just ignore it.

As I said above look after yourself as best you can. Make that a priority.

And ignore me if what I’m offering is no use.

:heart:

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I know being told to take care of yourself and actually doing it are two different things…I live all on my own with no one checking or helping and I know the mental toll of this seems crushing at times. I detect from your post that you are a strong person…you still have your Karen at your side….this day will pass into another better one…. Take heed of any advice from this forum eg Bobbi/Pando, these guys/gals know what they are talking about…meantime just you hang in there, vent on here if needed. Much thought goes to you x

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I would echo what @Bobbi has said. You MUST take time out for yourself. As he says if you end up in hospital that will just create a bigger problem.

The tasks you need to do can wait. Take one at a time & do the most important first. Have you sought advice from Citizens Advice they can help with some things. Your local council may also be able to help.

Speak to your GP too. They have carer support networks. They can help you either coping strategies etc. Helpful hints on how they have dealt eith things.

Karen can probably be left longer than you think if you need to pop out. My husband used to leave anything I might need within reach so I was ok for a while. He is self employed so had to go out and earn a bit of money so we could live and I had to get used to him not being there at times. He started with very short periods and then gradually increased the time away.

Just take it steady. Rest as much as uou need then tackle one other thing on the list then rest again.

Have you tried an insurance broker for your car insurance? They are the experts in finding the insurance you need. Perhaps look into carers too…maybe you need some help and they might just ease the pressure for an hour each day.

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Nothing amiss about having a good moan, have you looked into the carers support guide that Headway offer? They are a brain injury organisation, not just stroke but brain injury in general. There might be some info on local and online support groups for carers that could ease the emotional burden you are feeling now or provide useful contacts for assisting with care.

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As for having to be apart for bit:

With a mobile phone each you have permanent instant contact, emergency contact too if needed.

These days, they are essentials not luxuries. They can be purchased second hand, refurbished, a lot cheaper than brand new.

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Thank you. Unfortunately it’s the wrong area. I’m on the south coast. Not much seems to happen here.

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GP worse than useless unfortunately, and CAB take weeks for a half hearted response. Still working on insurance but many of them want Karen’s licence details, which I no longer have as we returned it to DVLA. Sadly, nothing is straightforward these days.

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We have mobiles, only I don’t think Karen would know what to do in case of an emergency. Her aphasia is very variable and only in good days is she capable of acting independently.

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@2Weevils

If your vehicle is SORN and registered as such then there is no requirement to tax or insure it.

Under certain circumstances it can also be moved if necessary. I’d check that out first though.

No worries if it’s just going to stay where it is, off road.

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Thanks. Yeah, I know, but I just don’t like the idea of an uninsured car sitting in the private car park, five feet from my front door. I think it’s a matter of trust round here and whilst nothings happened to it in the three years we’ve owned it, I can’t afford to replace a 22K car if something did happen to it.

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I know you’re not interested but I have my car parked on a space in front of our house.
After some very strong winds a load of roof tiles showered down on my parked car in the middle of the night.
The insurance company shillied and shallied and I had to pay for very expensive repairs to the body work followed by a respray.
My car was less than a year old. I still feel sad thinking about it and get very nervous if there is wind or a noise outside.

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Hi Sorry to read all this
I dont know if you have a Carers Xyz, wherever you live?
Are you able to put it into the Search engine?
You sound as if you need someone to step in and take over a lot of Karens care and all of your admin, asap. While you get some support for the issues you have developed due to you focussing on Karen. Something many people do, but you do need some substantial support.
I think there are Autism support groups, do you have a local one?
Dont think about the people who arent stepping in that you would have liked or expected to, as this is taking up mental energy you need for yourself.
Kerp posting here but also do one action to get support for yourself, there are groups and individuals who can help if you look in thecright places.
Good luck!

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Hello @2Weevils - I believe your name is Patrick. If I remember rightly, that is how you signed off on one of your posts. It’s nice to meet you and whilst there is a lot I’d like to say to you and I regret I have not had the change to reply to your many posts, for now, I just want you to take your own advice as below.

I have been following your and Karen’s story from your first post but held off offering any advice as I felt you already had plenty of support from the forum’s members and I am aware this continues to this day. But now, I feel compelled to add my tuppence worth as I really feel for you every time I read your posts. I feel you are stick in a loop or cycle from which you are unable to break out and it is doing you and Karen no favours.

So in an attempt to try and help you break out I am now sharing the below, though I have my doubts as to whether I should as I do not want to add to your woes :frowning: So what follows is my thoughts of what I might do if I was in your shoes, which I know might be a dangerous thing to try to do as who can really step into someone else’s shoes. Nevertheless, I can hold back no more and I hope you will take this in the way it is intended which is to give you something else to think about or to try to find a different way of dealing with your situation. I mean no offence and I do not intend to preach.

My wish is for you and Karen to get some peace and in order to do that, I would like you to break out of your cycle. Please do with this message as you wish, but just don’t take it as anything other than well meant commentary on your current situation.*

If I may Patrick …

It seems to me you are overwhelmed and you are getting lots of advice and information, but with so much on your plate, you simply cannot cope on your own.

I note you have have had plenty of responses to all your posts since you shared your and Karen’s story on this forum. You have been through and are still going through a lot.

I feel you are going round in circles - at least that is what I have seen since you first posted here. To break this cycle, I feel you may need to stop everything you are doing, take some time to breathe and sit down with Karen.

When you sit with Karen, think about what you both need and write these things down.
Then prioritise these things.
Think about what you can do for yourselves and where you may need help.

Once you have done that, stop and think again.

Ask yourself, if you really can [carry on doing] do this on your own and if not where you’re going to get your help from. I have seen comments from you where it seems you feel you are on your own and everyone is “useless” - GP, family, friends, stroke team, physios etc. Everything is working against you, as you see it. If this is the case, perhaps you need to think how you might turn things round.

With all the good intentions of all the respondents on this forum, many of whom have offered you excellent suggestions, I feel you are not helping yourself. If I am wrong and I have misread the situation then I can only apologise, but to me, there is way too much negativity coming from you and it seems to me you are running around like a headless chicken.

You have lost focus, you are not eating well, you are not sleeping well and with all this, I don’t know how you can help Karen.

First, you have to help yourself.

So, to start with, do as you say.

I equate this to “sleeping on it”. Allow yourself time to think and digest, assess the situation and then accept that sometimes things are what they are and we have to do the best with what we have.

What i am trying to say is it is time for you to accept that you require some help as you simply cannot do this by yourself, not just you, I doubt if there are any who can deal with all you are trying to deal with.

Sometimes when we are engrossed we cannot see the wood for the trees. When this happens, we should step back and give ourselves a moment to breathe and to take time to think.

Think about what is most important and focus on that.

I think I have said enough and maybe said too much, but I say again, I only wish to try to offer you a way out of your current predicament. I know or get the feeling you are an incredible person who probably doesn’t need someone like me poking their nose in, but nevertheless it is a risk I am willing to take because I think you and Karen deserve better :slight_smile:

I wish you both all the best and ask for forgiveness if I have spoken out of turn.

Sending you peace and love :heart:

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Because we live quite rurally, there’s nothing local or conveniently local. And we live in the west of the county where all the support groups focus on the east because that’s where the population centres are. I had this issue finding support as an autistic person, nothing within 40 miles.

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I live rurally too (West Wales) and by default rely on online contacts more than anything else. My mobility issues restricts me from accessing many essential services in the cities. That’s why services like Headway may be a starting point, not ideal, but at least some twine that may lead somewhere.

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I don’t think these people are ‘useless’, but the help they offer is minimal at best. They don’t see Karen 24/7 like I do and do their views on her limits and my ability to cope are based on their limited interactions with her.

Her GP says she has made a remarkable recovery. True from being on life support, but he makes it sound as though she could go back to work tomorrow.

The stroke team asked about my own health and I told them everything, to which they responded ‘oh, that sounds a bit hard’ and offered no practical support or suggestions. If that makes me sound as though I think they are useless then so be it, but as I say, they are limited in the support they appear to offer.

I’m sorry you read my remarks as believing everyone is unsupportive, I’m sorry, I’m autistic and view life differently. But I will shut up now and get on with life and stop boring people on this forum.

Take care.

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@2Weevils I don’t know if this helps but I have just googled insurance for worn vehicle where licence has been surrendered due to medical issue and it came up with the following

Best SORN Insurance Options for This SituationBecause the car will be sitting indefinitely without being driven to shows or garages, you need simple, low-cost “laid-up” cover:

Sorn Insurance (by Principal Insurance): This is ideal because they offer straightforward 6-month or 12-month policies explicitly designed for cars sitting on driveways or in garages.

Adrian Flux: They are very flexible with medical situations and can offer fire and theft-only policies that do not require a valid driving licence to set up.

SORN Cover: A quick, purely online option if you want to get the vehicle protected immediately without spending time on the phone.

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