I'm really lost

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1

I've had a number of occipital strokes but was unsuccessful at getting help with these before, during or after. Instead of getting the help that I needed, doctors avoided the issues I complained about, and kept insisting that the numbness in my arms and legs, especially on my right hand side, were caused by a trapped nerve in my neck.

A&e departments at various hospitals refused me help, even at times when my eyes had been rolling around in my head.

I had first sought help in early 2014, then reported having woken to find the right side of my face had dropped, in January 2015, but again was refused help.

Approximately March of 2017, I suffered numerous attacks over a period of about two months, but again a&e refused to help me, my GP told me to go to an optician, the optician told me to go to a&e, and a&e told me to go back to my GP.

I had several refusals to help at other hospitals after that, even though they pointed out to me that it looks as if I've had a stroke.

It was only in February of this year that I finaly got help, after wrtiting long letters to my GP and asking for them to be copied to my medical record.

At this point, the hospital that had refused to help me called me in for a brain scan. At the same time I was referred to Moorefields eye hospital who also requested a brain scan, then tried to discourage me from going back to the hospital that did the previous scan.

They were not aware that I had already been back, to a&e, for an unrelated incident, and that the a&e doctor showed me my results, that I'd had a number of strokes in the left occipital lobe. He also stated that the records had been altered to make it appear that I had been treated there for stroke, which I hadn't.

After this, Moorefields refered me to the first hospital that had refused to help me, back in early 2014. They also did a scan, and asked me loads of questions, it then became apparent that they were only asking me to get their records straight.

Since then I've had no further help.

I appear quite to normal to the outside world, I seem to know what I'm talking about, but the reality is that no one has any idea what's going on inside me.

I do get out and about, but it could take me all day to be able to venture outside the door.

Since the series of strokes in early 2017, my ability to accomplish anything is practically zero, I live in a total mess with bed bugs crawling over me all night. My flat is like a rubbish tip. I've never lived like this before.

Getting help is difficult, especially as doctors continue to palm me off with flippant remarks...i.e. 'doc, I feel so tired all the time, I can't get anything done with my life' response: 'You've suffered from stroke, it's normal'.

I've not been able to work in over 4 years, I've relied on ESA, but was refused PIP because doctors didn't support my claim, putting everything down to a trapped nerve in the neck.

I have recently applied again, this time with full details of everything and how I was constantly denied help. I am waiting for the results, having had the assessment a couple of weeks ago.

But in the meantime, I no longer know how to cope. I lost that ability a long while back, but my living conditions have got so bad that I don't even know how or who to ask for help. Besides, I couldn't bear to let anyone into my home to see the mess I live in.

Just hoping that someone might be able to say something to me that might help.

2

Dear Phoenix, it sounds like everything has spiralled out of control for you. I think I would go back to your doctor and explain how bad things have got for you. They should know who to put you in touch with to help sort out your home, your finances etc. 

It sounds as if you need a social worker or a case worker to help you out. Maybe someone on this site will know who can help. 

Hope you get some help soon

Ann.

 

3

Hi, you poor thing.  The first thing I would say is never give up, keep plugging away and you will eventually get through to someone.  Do you have any family who could help you with the living conditions.  Secondly, ring the stroke helpline, who hopefully will put you in touch with a stroke coordinator who will be able to help you with lots of the problems you have, even get you refered to a councilor.  Do give them a ring. you have taken the first step in telling everyone on here that you need help, now take the next, pick up the phone now and call.Good luck.  Wendy

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Thanks Wendy, I will do that.

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Thanks for your response, Ann, things spiralled out of control long ago, at a time when no one would acknowledge anything wrong with me. I changed doctors 7 times becaue I wasn't getting the help I needed, and my new GP seems to want to avoid contradicting previous GP's. I really give up with doctors.

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Hi Phoenix - it sounds as though you have been very badly let down by professionals who should be there to help you.  I can imagine that it must be incredibly difficult to feel that you can trust anyone, after all you've suffered.  You've already had some good advice from some of the wonderful people who post on this site.  Trust me, they are an amazing group of people, I couldn't have managed the last year without their support and advice.  

The key to your situation is small steps.  Although you currently feel that things are out of control, they didn't become like that over-night, so in order to re-gain control you will need to take one step at a time.  If you don't have any friends or family living close by, you can certainly find help on this site - whatever the time of day, or your current emotional mood, someone is always awake and reading!  Follow the advice suggested by previous posts, and you really need to find a GP who is on your side and willing to fight your corner.  Keep posting, and let us know of your progress - you've made a great first step by making contact - you will look back on this time as a pivotal point in re-gaining control of your life.  Stay strong ?

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I am really astonished about this. the time you need the most help and you have been badly let down  

I don't know if there is a health ombudsman but seems we need one in cases like yours 

I had an infestation of bed bugs once too. the only way I got rid of them was by scrupulously scrubbing the beds. they don't just hide there either. we have wooden beds and I found they would hide inthe screw holes. I found no pesticide that would work. only the mechanical method of physically removing them and scrubbing with dilute bleach. I could not do it now. I t was terribly demoralising. so big sympathy. on top of stroke too, you are doing brilliantly to manage what you are managing. I hope you can get the help you need.  I am sure all of us agree that you have been treated appallingly. rapid action if stroke is suspected is essential. your professionals should know this. it just highlights how little is known about stroke  so thank you stroke association. and keep the pressure up. I know how difficult that is when resources are scarce. but the information and campaigning role you play is vital. as experience s like this one show. 

keep going. don't give up. 

Tony 

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Thanks NicABella21, I appreciate the comment. I've been taking small steps, but find I go one step forward and three steps back. It was in trying to make my surroundings easier that I got into such a mess, I don't realise that I can't do what I used to be able to.

I do know that things can't go on like this for me any longer, I've reached the lowest of living standards, but I've always been the person who people come to for help, I find it quite difficult to be the one asking.

It is amazing to find there are others who understand.

Thanks again

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Thanks Tony, I moved from one area of London to another about a year before this started, and when I first went to a&e about it, they refused to help me. I won't go into the entire story because it's appalling all the way down the line, but I realised from an early stage that something was wrong, as if they were all referring to wrong medical records.

I put in complaints after 10 months, two GP's responded quite quickly, but the hospital that refused me help took a year to reply, and when they did they lied, so I rejected the response. The moment I rejected the response, I had no further help, although the only help I was getting was a pain clinic. I was offered an occipital nerve block, as they were still insisting this was a trapped nerve, and I refused, so I was discharged.

The problem with Ombudsmen is that although there is one, you need to go through a procedure, put in complaints to those you're complaining about, and if not satisfied you can then take it further, but you only have a year to do so.

In my case it was one proffessional after another refusing me help, and I've never had this kind of thing from medics before moving to my current borough. Even my MP wouldn't help.

So how was it possible to complain to the ombudsman when a) it was never ending situation and b) You have to go through your MP to do so.

But records do show that I specified what was wrong with me from the start. Although I was not right, I wasn't far wrong. I told my first GP that I have pain in my right eye going through to the left occipital lobe, I told her I had symptoms similar to those of Fibromyalgia or MS and as I was certain the problem was in my brain, I wanted a Neurologist, as I needed a brain scan. This is exactly what I told them, and they eventually found that the infarctions I have are in the left occipital lobe and this type are known to cause symptoms similar to those of MS and are thought to be a cause of Fibromyalgia. Why did it take 4 years to get a brain scan?

Sorry for the waffle, it's good to get it out, i will phone that number given by...I think it was Wendy? It sounds like a good idea, but I am awful at asking for help. I'll have to wait for a good day!

These bugs...I honestly can't believe I'm living like this. I have a life long phobia of spiders, have been known to leave home when they're about, but now I just stare at them all over my flat.

Thanks a lot for your comment, Chris

 

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The impact is massive and can't be underestimated.  I know it's just one more thing to do, but ... I kept a brief daily log of things my husband was doing (or not), it was prompted by an OT suggesting I kept a food diary as he had completely lost his appetite.  Initially it was very brief and very repetitive - he could make a Brazil nut last a whole day, so it became more than a food diary, and gradually I noticed differences.  Very minimal, but I had evidence of progress, for my own sanity and to to be able to show my husband when he felt like he was only going backwards.  So if you can spare a few minutes a day, make a few notes, and look back in a month and you'll be surprised and motivated by what you've achieved.  I used photos, and videos a lot as well, because it's so easy with camera-phones - a picture is worth a thousand words?  

Sorry to be so wordy - hope you don't fall asleep reading this!!  ??

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you really are up against it. and it sounds like you have tried everything.  there has been a city wide problem with bed bugs, but  no one admits to it because they are associated with shame. if you say you have them you feel you will be judged for careless and dirty living. it is notthing to do with that. bugs are opportunist. and incredibly tough and mobile.  that's not very reassuring I know. and it is shocking to find you have an infestation.  check your cupboards and drawers. they will lurk in  cracks, even in tears in wallpaper. you will need some help and all thhe courage you can muster. on top of fighting with the health professionals you have more than enough to to cope with. final thought

non of  this is your fault. you have been badly let down.  and anyone can get bed bugs. takes guts to admit it but it is the only way you will have a chance to get rrid of them.

you have got  guts. be ass persistent as a bed bug :) and yes use  the forum to offload.

I hope you can get a better resolution to all thhiss and the medical help that you need.  

 and you have a bug free night soon. 

Tony 

12

Dear Pheonix

I do feel for you. I hope you grasp there are thousands of us who do actually know what you are going through. And at the very least we are willing you on.

One idea is that you push the bad experience to the depths of your memory and try to think of yourself as disabled but recovering.

I have kept a stroke diary as I find it helpful. I also keep a diary for what I have to do tomorrow and next week. I try to only list things I know I can complete. This does ease my problems. I had noticed that just thinking about the next task actually uses up my mental energy. So I write it down and let my diary control what I must do. Hope this makes sense.

You need outside help to clean your home just once. Maybe the stroke association can direct you. Or what about your local church. They can be a mine of info and contacts. If you tell them you are not a christian/whatever religion that church follows but that you need help then you might get the contacts you so badly need. 

Yes we all look well, often disgustingly well, and people dont believe we are disabled. But they cant see inside your head, where the damage has occurred. Only another stroke survivor understands.

PIP is a so and so. Often refused. Keep trying, they will pay you in the end. 

Do accept that there a lot of good people who will not mind the temporary state of your home. 

Once we have been declared medically fit, often this is just days after the stroke, then the help is poor. First few weeks there is some help but then its all a blank. GPs will help you, but please think about how they work. You need to present to them a single specific problem that you describe fully. They will then do their best. I dont even mention the stroke anymore. I ask for help with my ankle/ears/chest pains or whatever this months difficulty is.

You can rise from the present ashes. Forget the awful past treatment and slowly move forward. Tiny steps will get you wherever you want to go. New Phoenix will come out those ashes and fly.

Best wishes

Colin

 

 

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Kind words, from someone who's been there, (and informative) - thanks Tony 

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I am absolutely appauled and disgusted to hear of your experience Phoenix. To be quite blunt, that is 'neglect' on the part of the professionals pushing your from 'pillar to post'. I sense your amazing courage to keep going even though you have been failed by the health professionals who were supposed to take into account your best interest.

As Wendy and Colin said, seeking advice from the Stroke Association/Line might give you the support and advice you so need.

As for the doctor stating, 'normal', there's not much more to say. No one will ever understand the experience and impact of a stroke unless they have gone through it. We are here to support you!

 

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I am absolutely appauled and disgusted to hear of your experience Phoenix. To be quite blunt, that is 'neglect' on the part of the professionals pushing your from 'pillar to post'. I sense your amazing courage to keep going even though you have been failed by the health professionals who were supposed to take into account your best interest.

As Wendy and Colin said, seeking advice from the Stroke Association/Line might give you the support and advice you so need.

As for the doctor stating, 'normal', there's not much more to say. No one will ever understand the experience and impact of a stroke unless they have gone through it. We are here to support you!

 

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Colin thanks, that's a very thoughtful post. I connect wth everything you mentioned, and especially thinking about the next task using up all my energy!

I have not contacted the strroke assc yet, I suffer constant headaches and have been going through a particularly long run, but will do so as soon as I am up to it.

My home is getting me down more than anything and it's gone beyond the stage where I could actually let someone in to help. I seriously don't know how I'm getting out of this, especially as I've had no good days in a long while now, and have to sleep so much.

I will contact the stroke assoc for sure, thanks for your helpful message.

Chris

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Thanks smichael, I appreciate it.

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I cant find help either SAH a year ago. but i look ok .. well im not and its hard.

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Dear Chris

Only another stroke survivor can understand what you are going through. When you say  "I've had no good days for a long time" then us SS know what you mean and our hearts cry for you. The best meaning "other people" do not have a clue.

Being smashed just getting ready to go out is another thing only us SS share. Or even worse just thinking about it.

I dont get the headaches which is odd given the damage is all inside our skull. But we are all different, we share many common threads but  each one of us is unique.

Regarding the state of your home, there are people who will help you and will not judge you badly. I have a good friend who could not clear up his home. He slept elsewhere because his own home was so cluttered. But he got help. He got a grant to pay for a professional to assist him clear his home. Hopefully someone on this forum will know who you might contact in your area.

My friend now sleeps in his own home and is gradually clearing through and especially cleaning. He had been in a state for many many years. He is so much better for having the stress eased. And he is working through his other problems nicely. I never thought I would see him recover, but delighted to say I was wrong. 

Now, if your place was properly cleaned once for you, then you might be able to keep it ticking over. 

You can do it Chris. Have faith in yourself.

Colin

 

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yes