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We want to hear from you: please tell us about your experience of the online community.

Hi, my name is LouRoots8!

LouRoots8

Hi,

I am LouRoots,

I am in my early 30s.

It’s been a rollercoaster of a few years.

My previous invisible disability has now become visible and I’m now getting used to using a wheelchair.

I’ve been battling the social care and health care system to get some support. I have lots of rare, unusual and complex illnesses that no one really knows how to managed.

I am passionate about human rights, feminism and advocating.

I’m going to have a look around and add some more later.

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Comments

janer1967

Hi and welcome to the community Feel free to join in or ask any questions

Thanks for sharing with us about yourself I think you will enjoy being part of the community

Duninn

@LouRoots8 - hi, it sounds as though you’ve been having a rough. Hope you get some support here, I did.

chiarieds

Hi @LouRoots8 - & welcome to this friendly & supportive community. Thank you for joining & saying about yourself. How is using the wheelchair going, is it giving you a little more independence? I'm sorry you have been having a battle to find appropriate care, so do you have that needed support now?

Would it be OK for me to ask the nature of your disabilities....sometimes we have members that may have something similar?

Anyway, you sound like you'll fit right in, & I look forwards to your contributions.

LouRoots8

Thanks for saying hello. @janer1967 @Duninn

@chiarieds I don’t mind you asking about my disabilities.

So this year I have had a brain haemorrhage and stroke.

Previous to this I have been under investigation for mitochondrial disease. (Rare genetic disease). Now they believe I have a different type of metabolic disease.

I have chronic lactate acidosis

repeated ITU admissions with severe asthma over 20 in about 8 years m. I have stopped breathing a few times.
I go into respiratory failure frequently.

I have what they believe is central nervous system Vasculitis, plus Vasculitis in my legs. The Vasculitis in my brain has caused Moyamoya syndrome. - I’m still trying to get under an appropriate Vasculitis service. They believe that this is casing the strokes.

I am type 1 diabetic, I have Cushing syndrome, blood issues,

I have psychosis that is interlinked with my physical health needs.

I’m under about 20 services. None communicate.

I’m waiting to be taught how to self catheterise. As my bladder doesn’t work.

I have found wheelchair using tough. Eye opening and not as easy as I thought it would be.

I’ve still not been seen by the wheelchair service ended up doing a long term hire. That has got me in debt. I’m still waiting pip. That has been stressful. I also didn’t know how to but a wheelchair, what to look for. There aren’t really lots of reviews, or anything. Most things are targeted for older people. My needs are different. I went fit the foldalite trekker.

I have no depth perception so struggle seeing and finding drop kerbs. So I’ve fallen out the wheelchair. So that’s been hard.

I did a solo trip to london and almost declared war on TFL who told me I should be greatful. After I had missed 3 trains and been delayed 1.5 hours over TfL and network rail arguing about who job it was to put me on the train. On a turn up and go service. (At that point I decided that I am going to need to calm down going forward). Although I’m angry about how inaccessible things are.

I do love my wheelchair. Once my flat is adapted it will be so much easier. I haven’t been able to walk properly for a while and hadn’t realised how much I had stopped going out. So the wheelchair has given me freedom to walk around the block.

I’ve had issues with the care act. I’ve been waiting for a CHC assessment over a year. It’s been a nightmare.

I have a package of care by personal budget but no carers. My PA walked out Monday. She had only started 4 weeks ago. It took 3 months to find her. I’m now looking for 3 PAs to cover 45 hours per week. At the moment I’m relying on my family and we have a challenging relationship. That often breaks down. So it isn’t sustainable.

Things are messy right now.

I’m awaiting to find out what treatment I need for the Vasculitis. It’s likely going to be high dose steroids and low dose chemo. Although who knows!

Thank you for saying hello.

chiarieds

Thank you for your kind reply @LouRoots8 - I'm sorry to read about your brain haemorrhage & stroke & ?Moyamoya disease as the underlying cause of your stroke. You certainly have a lot going on healthwise in addition to this.

I'm also sorry to read about your difficulties with care, & the lack of communication. Have you involved your GP; surely a concern at least should be that you need help with self-catheritisation?

How is your PIP claim going?

I hope it's not too long until your flat is adapted, which hopefully will make your life easier. What causes your depth perception issues?

Anyway, thank you for saying more; we have members that have suffered a stroke; mitochondrial disease has also been mentioned, but this seems to have been ruled out in your case, rather lactic acidosis.

Hopefully others may say about their problems (& solutions) with PAs, which unfortunately has happened with them too. Sorry things aren't great with your family as far as your care needs go.

ginna15

Hi louroots8, welcome. I’ve only posted here for the first time today and found everyone really friendly and helpful ?. Thank you for sharing your situation with us, I can’t begin to imagine how frustrated and angry you feel, but reading through other posts there is so much constructive help to be found here. I look forward to hearing more from you.

LouRoots8

@chiarieds

they think that I have Vasculitis in my brain that has caused Moyamoya syndrome (it’s different to the disease, it’s just a way they describe the appearance of the small vessels) they think they Vasculitis caused the strokes and bleeds.

The mitochondrial disease is still a question. Although it looks like another inherited metabolic disorder is more likely. Everything I have is rare or really really rare.

I sent off the PIP claim. It was just really long. I sent of 18 reports. Suppose a plus side to having lots of health issues is that I’m under a lot of services.

I think the depth perception is what ever is going on in my brain is causing issues with my right eye. I have sight but don’t understand what I see. It’s hard to explain. I can’t tell the different from a shadow or object. It’s got worse since my first stroke in jan. I can’t see if a bowl has water in it. Things like that.

The GP is a nightmare. Has never met me; I signed with them in feb. They have refused all appointments. It’s been safeguarded. NHS England are aware. Social services have also been unhelpful. I’ve been left without life saving medication. They wouldn’t even see me when I had pneumonia. They are the worst thing ever.

chiarieds

Hi @LouRoots8 - sorry, I could only see more about Moyamoya disease. which also can cause strokes, not a syndrome, which is often an umbrella term for those that have similar symptoms, e.g. I have Ehlers-Danlos Syndrome, a genetic disorder in which we share some similar signs & symptoms. Please forgive me if I'm not correctly understanding you from what you've said.

My best wishes for your PIP claim, tho to be honest perhaps sending off many medical reports doesn't get a PIP claim awarded, rather it's your real life detailed responses as regards the activities/descriptors that are looked at with PIP. Please see: https://www.cambridgeshire.gov.uk/asset-library/Personal-Independence-Payment-Descriptors-and-Scores-April-2021.pdf reading the notes at the end.

Sorry about your depth perception problems, which you have explained very well. As far as a GP goes, can you at least get a phonecall with another hopefully proactive one in the practice?

You might think I'm being controversial, but am just wanting the best for you, which is also why I sometimes ask questions, & post about what I've learnt about PIP. Hope that's OK.

LouRoots8

I explained how each condition affected me on the form and I have a lot of medical conditions. So that is why there so a lot of medical reports. I had one from each condition and team to back up what I was saying.

It just took a lot of time to do. Because I have so many health needs and there are multiple reasons why I struggle in each area.

Ross_Alumni

Hello @LouRoots8

Welcome to the community, thanks for joining and I'm sorry to read about everything you've been through and are going through.

It's a shame that getting some care has been such a challenge, and that your GP isn't exactly helpful in supporting you. As queried by another member, could you request to be referred to a different GP who might work better for you?

Have you spoken with the opticians about your vision to see if they can support you in any way?

I do hope that your PIP claim goes well, perhaps it might be worthwhile to contact your MP about everything you're going through and the lack of support you're receiving for everything.

Do you receive support to manage your mental health? Do you have effective coping techniques in place?

LouRoots8

There is no other practice in the area that will take me. NHS are aware. Not that they have done anything.

The MP is aware.

I also have just gone three a 3 year ombudsman complaint against social service and CCG for failure to provide 117 aftercare relating to my mental health. The ombudsman found them both at fault upheld the complaint and nothing has changed in my care.

In terms of mental health support or any actual support I have a great CPN who has been battling this chaos for 2 years. I am on CPA but my psychiatrist who is supposedly heading my psychiatric care refuses to see me. My CPN safeguarded him. So there is no management from them either.

The situation is a massive mess. The messy it has become the less anyone wants to help sort it.

My physical health has been rapidly declining for the last few years. It really is all a mess.

I haven’t gone back to the optician since my stroke but plan to see them in the next few weeks if I don’t get seen at a specialist hospital. I have a lot of medical appointments. Last month I had 28 appointments in 21 days. 90% are in person and are specialist hospitals all over london, it takes 2 hours each way to attend.

There is no joined up care.

I’m not really looking for advise as I have done / tried most things. To resolve this.