struggling to cope
Discussion
These last 18 months, my daughters epilepsy/non epilepsy has been rather out of control.
She's just completed a medication review and change program but the seizures would still be every day/other day if it wasn't for Clobazam.
Every seizure result in a dislocated right shoulder, resulting trapped nerves, severe pain,
Pain is one of the triggers for seizures.
The shoulder surgeon says, "6 month seizure free before an operation!!!
The local hospital do nothing for her.
Years ago an A&E Consultant accused her of facing seizures/dislocating her shoulder on purpose.
She argued with him and, along with another consultant, they wrote a 'Care Plan'.
One its guide lines is that she is not to be x-rayed.
So, when she had a seizure at the top of the stairs 3 weeks ago and crashed down to the bottom, I had to call for an ambulance.
Right side took the blows, head, jaw, back, ribs, knee.
They took her to the local hospital, who, after many hours said that they would be following the 'Don't Care Plan'.
I took her to another hospital where they scanned her head and back, x-rayed her shoulder and knee.
Relocated her dislocated shoulder and fitted a large knee braise.
This situation is being discussed with PALS.
I watch her all of the time.
I've caught her several times and stopped her crashing to the floor but I've missed way more.
This year she has 11 nasty gashes on her forehead.
Finding her in pools of blood is awful.
And now, last Thursday at 02:00am, I had to call for an ambulance for my wife.
She was gasping for breathe and is now on the Cardiac Ward, diagnosed with heart failure.
Been on oxygen since and antibiotics to clear her lungs out of fluids.
This has taken me over edge as far as coping.
The doctor has sent me a message with links to mental health/stress/anxiety support.
Non seem to be describing where I'm at so I thought I would try Pistonheads.
Out shopping at the weekend and nearly started to cry because I couldn't find the Jammy Dodgers.
Any advice very welcome.
Thanks.
She's just completed a medication review and change program but the seizures would still be every day/other day if it wasn't for Clobazam.
Every seizure result in a dislocated right shoulder, resulting trapped nerves, severe pain,
Pain is one of the triggers for seizures.
The shoulder surgeon says, "6 month seizure free before an operation!!!
The local hospital do nothing for her.
Years ago an A&E Consultant accused her of facing seizures/dislocating her shoulder on purpose.
She argued with him and, along with another consultant, they wrote a 'Care Plan'.
One its guide lines is that she is not to be x-rayed.
So, when she had a seizure at the top of the stairs 3 weeks ago and crashed down to the bottom, I had to call for an ambulance.
Right side took the blows, head, jaw, back, ribs, knee.
They took her to the local hospital, who, after many hours said that they would be following the 'Don't Care Plan'.
I took her to another hospital where they scanned her head and back, x-rayed her shoulder and knee.
Relocated her dislocated shoulder and fitted a large knee braise.
This situation is being discussed with PALS.
I watch her all of the time.
I've caught her several times and stopped her crashing to the floor but I've missed way more.
This year she has 11 nasty gashes on her forehead.
Finding her in pools of blood is awful.
And now, last Thursday at 02:00am, I had to call for an ambulance for my wife.
She was gasping for breathe and is now on the Cardiac Ward, diagnosed with heart failure.
Been on oxygen since and antibiotics to clear her lungs out of fluids.
This has taken me over edge as far as coping.
The doctor has sent me a message with links to mental health/stress/anxiety support.
Non seem to be describing where I'm at so I thought I would try Pistonheads.
Out shopping at the weekend and nearly started to cry because I couldn't find the Jammy Dodgers.
Any advice very welcome.
Thanks.
Edited by so called on Monday 21st October 18:47
I can’t offer any advice I’m afraid other than go out running as that helps me when my nervous energy is off the chart, if I go and tire myself out with a run I feel a bit better afterwards. I’m not even a runner but sometimes my nerves make me go and do something rather than going mad.
Sounds like a very difficult set of circumstances and I feel for you even though I can’t help. Hope you can find a way through.
Sounds like a very difficult set of circumstances and I feel for you even though I can’t help. Hope you can find a way through.
Wow this is a tough read. I'm so sorry.
Its all well and good the docs talking about anxiety support, but it strikes me that you need ACTUAL hands on help! Nobody should have to manage this alone. What financial support is available to do that? Sorry, I'm not an expert at all in this.
Are you satisfied with the medical interventions in your daughters treatment to date? It just doesn't sound viable to be having seizures with this regularity.
And now your wife on top. Do you have friends and family you can call on?
Its all well and good the docs talking about anxiety support, but it strikes me that you need ACTUAL hands on help! Nobody should have to manage this alone. What financial support is available to do that? Sorry, I'm not an expert at all in this.
Are you satisfied with the medical interventions in your daughters treatment to date? It just doesn't sound viable to be having seizures with this regularity.
And now your wife on top. Do you have friends and family you can call on?
That's all s
t. Well done for coping with all of it so far.
Try https://www.mind.org.uk/about-us/local-minds/
But in the very short term, https://www.mind.org.uk/information-support/guides...
As a long term mental health sufferer, the simple act of talking to someone who will actually listen can really help. GPs and not equipped for acute situations. Call one of the lines in the link and let us know how you get on.
Don't be in any doubt. You're under massive stress and could definitely do with help. We all can sometimes.
t. Well done for coping with all of it so far.Try https://www.mind.org.uk/about-us/local-minds/
But in the very short term, https://www.mind.org.uk/information-support/guides...
As a long term mental health sufferer, the simple act of talking to someone who will actually listen can really help. GPs and not equipped for acute situations. Call one of the lines in the link and let us know how you get on.
Don't be in any doubt. You're under massive stress and could definitely do with help. We all can sometimes.
The First thing I want to say is think of better times ahead. Please do not do something now you will later come to regret.
Crying about Jammy dodgers is fine and completely understandable in your circumstances. A good cry will help.
Things will get better.
For tonight- please call the Samaritans- they're not going to help your daughter, but they will help you. In turn you will be able to continue to be the best you can be for her.
I'm sorry to read this. You are not alone.
Crying about Jammy dodgers is fine and completely understandable in your circumstances. A good cry will help.
Things will get better.
For tonight- please call the Samaritans- they're not going to help your daughter, but they will help you. In turn you will be able to continue to be the best you can be for her.
I'm sorry to read this. You are not alone.
As above you are dealing with a huge amount.
Your wife will understand that you may not be there 24/7 for her as she recovers.
Do not take this on alone.
Reach out to freinds or family no matter how far removed for support even if its getting them to go to visiting times with your wife whilst you sort out your daughter.
Dealing with epliepsy is tough until you get it under control but there is so much help and support out there.
There willbe a drug that works you just need to keep trying different combos and strengths until you find one that works.
I have handed my driving licence back 3 times because of epilepsy.
I seem to be settled now after changing meds during lockdown.
Your wife will understand that you may not be there 24/7 for her as she recovers.
Do not take this on alone.
Reach out to freinds or family no matter how far removed for support even if its getting them to go to visiting times with your wife whilst you sort out your daughter.
Dealing with epliepsy is tough until you get it under control but there is so much help and support out there.
There willbe a drug that works you just need to keep trying different combos and strengths until you find one that works.
I have handed my driving licence back 3 times because of epilepsy.
I seem to be settled now after changing meds during lockdown.
So sorry to hear this.
How old is your daughter?
I don’t follow the ‘no operation until seizure free’ decision.
I had my shoulder (rearward dislocation) repaired with Ti screws and a bone graft about three weeks after a particularly badly timed tonic-clonic.
There was nothing from my neurologist or the surgeon about waiting until seizure free.
Plenty of x-rays and CT scans.
Maybe an age thing? I was 49 at that point.
Sleep quality and stress are big factors so I would think that would override the need to wait.
Clobazam is a pretty heavy duty medication. How did they arrive at using this for her?
She is having regular EEGs, what do they show? Maybe change the neurologist and get a different opinion. Has she been through a suite of other drugs to get to this point?
Sorry that’s a lot of questions.
It’s a st thing to have to handle, but if she can get on the right medication and handle external factors then it will get better. Your wife as well…..I’m sure you are doing a great job with both. Chin up dude!
Sending virtual jammy dodgers through the aether to you now….
How old is your daughter?
I don’t follow the ‘no operation until seizure free’ decision.
I had my shoulder (rearward dislocation) repaired with Ti screws and a bone graft about three weeks after a particularly badly timed tonic-clonic.
There was nothing from my neurologist or the surgeon about waiting until seizure free.
Plenty of x-rays and CT scans.
Maybe an age thing? I was 49 at that point.
Sleep quality and stress are big factors so I would think that would override the need to wait.
Clobazam is a pretty heavy duty medication. How did they arrive at using this for her?
She is having regular EEGs, what do they show? Maybe change the neurologist and get a different opinion. Has she been through a suite of other drugs to get to this point?
Sorry that’s a lot of questions.
It’s a s
t thing to have to handle, but if she can get on the right medication and handle external factors then it will get better. Your wife as well…..I’m sure you are doing a great job with both. Chin up dude! Sending virtual jammy dodgers through the aether to you now….
Edited by jdw100 on Tuesday 22 October 05:18
Sounds hard, OP. Can think of 3 things you can do immediately (non at the expense of doing anything else)...
1) Look after your mental health by looking after yourself physically. Limit stimulants and alcohol. Eat healthily. Keep exercised. Sleep well (as you can). May be none of these feel easy or all of them do. Typically they all help.
2) You might not be sharing your problems or how you're feeling with friends or relatives. Many of us feel afraid to be a burden on others or give them the impression we can't cope. In reality given the choice many like to help. Give them that choice.
3) There are many ways to get support outside of friends and relatives, be it medical through your GP or via charities and support groups (even local church groups, doesn't matter if you're not religious).
Best of luck OP.
1) Look after your mental health by looking after yourself physically. Limit stimulants and alcohol. Eat healthily. Keep exercised. Sleep well (as you can). May be none of these feel easy or all of them do. Typically they all help.
2) You might not be sharing your problems or how you're feeling with friends or relatives. Many of us feel afraid to be a burden on others or give them the impression we can't cope. In reality given the choice many like to help. Give them that choice.
3) There are many ways to get support outside of friends and relatives, be it medical through your GP or via charities and support groups (even local church groups, doesn't matter if you're not religious).
Best of luck OP.
Sorry to hear what you’re going through OP, that’s an awful thing to be having to go through even if it were just one of them not all of it.
I’m in a similar boat with not being able to cope but for very different reasons, and I was advised to try Andy’s Man Club and Christ has it helped me. So many other blokes going through similar stuff and can’t find a way to cope but all there to support each other.
Maybe worth giving that a try and see how you get on.
Also, my messages are open if you wish to chat to a stranger that knows how you feel.
I’m in a similar boat with not being able to cope but for very different reasons, and I was advised to try Andy’s Man Club and Christ has it helped me. So many other blokes going through similar stuff and can’t find a way to cope but all there to support each other.
Maybe worth giving that a try and see how you get on.
Also, my messages are open if you wish to chat to a stranger that knows how you feel.
Sorry to hear what your going through. Your family are very lucky to have you.
Sounds cliché but acknowledging that something is not right and has to change is a big step. Talking to someone/anyone will help. Have had similar issues and beginging to let it out was a massive relief. Just saying it out loud instead of it rattling around in your head. Be open to trying anything suggested while at the same time admit if it makes no difference to you and try something else.
I'm sure there will be others on here better placed with how to tackle the epilepsy issues.
Keep your chin up. You are doing great.
Sounds cliché but acknowledging that something is not right and has to change is a big step. Talking to someone/anyone will help. Have had similar issues and beginging to let it out was a massive relief. Just saying it out loud instead of it rattling around in your head. Be open to trying anything suggested while at the same time admit if it makes no difference to you and try something else.
I'm sure there will be others on here better placed with how to tackle the epilepsy issues.
Keep your chin up. You are doing great.
Sorry to hear your troubles, can be hard trying to hold everything together when you feel you feel like it's falling apart around you.
Do you get any downtime? Even when you feel like you can't be arsed? I'm a big advocate of exercise and sleep. A quiet walk on my own is a godsend when you need to try and clear my head. Do you have friends/family locally who could take the strain for a short while every so often?
Do you play golf? If so let's go for a round
- I'm not too far away from you and don't get out enough.
Keep talking.
Do you get any downtime? Even when you feel like you can't be arsed? I'm a big advocate of exercise and sleep. A quiet walk on my own is a godsend when you need to try and clear my head. Do you have friends/family locally who could take the strain for a short while every so often?
Do you play golf? If so let's go for a round
- I'm not too far away from you and don't get out enough.Keep talking.
Well, thanks very much for all of the responses.
The advice is very gratefully received.
I work from home so, as some of you will know, you don't get to speak with people very much.
Had a chat on Teams with one of my colleagues earlier.
I will be calling the Samaritans later today/after work.
They reduced my wifes oxygen level yesterday but had to put it back again.
The Ward is now locked down with Norovirus and she is already suffering the ill effects.
My daughters epilepsy was stable for many years but she started getting bouts of pneumonia. In response, they significantly reduced one of her meds which destabilised everything.
She lost her license and then, last year her job. Too many seizures at work and they couldn't cope.
We are not criticising that company as they were fantastic in trying to help.
The Epileptologist worked hard to sort things out but recent events have led to her referring my daughter to Salford Royal.
We don't know how long that will take but her GP is contacting them to stress the urgency.
Again many thanks for the responses, advice and support.
I've also received a number of e-mails from people on Pistonheads, and, from Pistonheads themselves.
I'd also like to say how wonderful and kind people have been when my daughter has had seizures when we've been out shopping.
Standing over her with umbrellas while we waited for an ambulance on one occasion.
Thank you.
The advice is very gratefully received.
I work from home so, as some of you will know, you don't get to speak with people very much.
Had a chat on Teams with one of my colleagues earlier.
I will be calling the Samaritans later today/after work.
They reduced my wifes oxygen level yesterday but had to put it back again.
The Ward is now locked down with Norovirus and she is already suffering the ill effects.
My daughters epilepsy was stable for many years but she started getting bouts of pneumonia. In response, they significantly reduced one of her meds which destabilised everything.
She lost her license and then, last year her job. Too many seizures at work and they couldn't cope.
We are not criticising that company as they were fantastic in trying to help.
The Epileptologist worked hard to sort things out but recent events have led to her referring my daughter to Salford Royal.
We don't know how long that will take but her GP is contacting them to stress the urgency.
Again many thanks for the responses, advice and support.
I've also received a number of e-mails from people on Pistonheads, and, from Pistonheads themselves.
I'd also like to say how wonderful and kind people have been when my daughter has had seizures when we've been out shopping.
Standing over her with umbrellas while we waited for an ambulance on one occasion.
Thank you.
Sorry to hear about things OP
I cared for my mum for around 10 years and what I picked up was:
1. The NHS are great, however they don't have the time to do everything they would want to, they'll rely on you and if they can, will pass responsibility over to you. This is fine, however look after yourself and if you're struggling to cope and can make them look after the other person, do that, do be pressured.
2. Local Authorities are excellent and have good staff, however they work on a similar system, I was told explicitly they wait for crisis point before helping or getting involved.
3. You've mentioned PALS, I always found them excellent.
4. Look after yourself, sometimes you have to be very selfish, don't worry about what other people might think or say, you're the one coping. Especially true of people just on the periphery or your family.
5. You're doing a great job!
I cared for my mum for around 10 years and what I picked up was:
1. The NHS are great, however they don't have the time to do everything they would want to, they'll rely on you and if they can, will pass responsibility over to you. This is fine, however look after yourself and if you're struggling to cope and can make them look after the other person, do that, do be pressured.
2. Local Authorities are excellent and have good staff, however they work on a similar system, I was told explicitly they wait for crisis point before helping or getting involved.
3. You've mentioned PALS, I always found them excellent.
4. Look after yourself, sometimes you have to be very selfish, don't worry about what other people might think or say, you're the one coping. Especially true of people just on the periphery or your family.
5. You're doing a great job!
While staunch PH purists will recommend an MX5 project car as the cure to all ills, in reality, PH is a good place to ask for help, because it's so often freely given. Just the tone of your reply has a more positive ring to it, which is wonderful to read. There are often no perfect solutions, or cure-alls, but things can and will improve and we're here for help and support.
Smitters said:
While staunch PH purists will recommend an MX5 project car as the cure to all ills, in reality, PH is a good place to ask for help, because it's so often freely given.
My experience exactly. I had a near meltdown a few months ago (for trivial reasons compared to the o/p’s) and came on here for help.Out with three ex co-workers (and the newborn of one), all female, I told the story and said I’d come on here. One looked surprised and asked what the reaction was. ”People are kind”, I said.
So, O/P, if you could hint what part of the country you’re in (presumably North West given mention of Salford?) someone might be able to offer some practical help? Also - whilst I’m not religious - maybe a local church or mosque?
Good luck, and love.
Edited by Octoposse on Tuesday 22 October 18:35
exactly that, no where near the same as you op, but had cancer back, very soon after masectomy was done last year, hubby was brilliant first time, but 2nd time knocked him on his ass, just seeing him let it all out one afternoon scared the hell out of me, but also was so good for him to let go, you just cant do it all, not all the time.
do what ever you need to do, thinking of you and yours
do what ever you need to do, thinking of you and yours
I'm struggling myself as well at the moment OP. I'm a dad to a kid with complex medical needs, carer to my father and I have numerous health issues of my own. Funnily enough I nearly burst into tears in Tesco yesterday for no reason. Well done for recognising you're having a tough patch and talking about it.
As well as Samaritans, have a chat with your GP. They may be able to make a referral for additional help and support, and can do the signposting that's required for support services.
As previous posters have said, there's almost certainly one of us PHers that's local and happy to go for a drink and to be a listening ear. It sounds like your family are blessed to have had your support over the years, I'm not surprised you're having a bit of a patch after all that. Stay strong and make sure to check in on here every so often.
As well as Samaritans, have a chat with your GP. They may be able to make a referral for additional help and support, and can do the signposting that's required for support services.
As previous posters have said, there's almost certainly one of us PHers that's local and happy to go for a drink and to be a listening ear. It sounds like your family are blessed to have had your support over the years, I'm not surprised you're having a bit of a patch after all that. Stay strong and make sure to check in on here every so often.
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