Friday, 30 October 2020

It's Been a Long Time!

 So, I've not written here in ages. I guess I wanted to keep L's life a little more private as she got older. But we are still on a long journey with her health and I think it needs a place to be recorded. 

I have also decided that this would be a good place to write about my own chronic illness. It's a difficult time right now and people are always looking for connections and help.

I don't know if I can help anyone, but I do want to share my story and if you can relate to any part then please feel free to get in touch to talk about it. 

As I've not written here in a long time I will start with a recap. I'll try and keep it brief, but it's not a short story.

First up, L's Story

From the very beginning I knew something wasn't right with my girl. She seemed to be in pain all the time. Of course, Drs said it was colic and such like, and nothing to worry about.
She developed normally, apart from her toilet problems. We tried everything, even to the point of painting the bathroom girly pink and buying a Princess toilet seat. But she just couldn't 'go'
She started nursery at 3 and was 'suspended' until we could toilet train her, when her teacher noticed I'd sent her to school in a 'pull-up' nappy rather than pants. Roll on 12 years later and she still wears pads and incontinence pads. 

I asked for help from an early age and to be fair we have seen a paediatric gastric doctor who first told us she had problems, then back tracked by saying he'd found nothing. We confronted him but he denied ever saying anything and refused to do the tests again. This is not uncommon. It's happened to me too. 

We did get a referral to a continence nurse who was really helpful. She explained how everything worked. shared videos that were child friendly so L could understand. Then told us it was constipation and that L needed a dis-impaction.


This needs a paragraph to itself. To dis-impact a bowel you have to empty it of everything. That means taking a solution (Movicol) that pushes everything out. Laxitives can be used if it takes too long, but it generally takes about 4 days. With L, it took 9 days. I want to tell you about the mess, but I'll leave it to your imagination. That's when the 'poo bucket' was introduced in our home. It's a nappy bucket that gets filled with soiled clothes so I can wash them seperately. I have to wash them by hand at first, generally down the toilet, then in the bathroom sink. Then a double wash in the machine. Then the washing machine gets a drum wash. This is a weekly, or bi-weekly task and it's the bane of my life. 

So, we dis-impacted. To the point of water like poo and no lumps. Then L became constipated again less than a week later. The nurse said this was common and we had to dis-impact again. We went around this cycle for FOUR YEARS! No further help was ever offered so we stopped going to see the nurse. 

We still dis-impact occasionally. She gets constipated again straight away. 

But L is More than Poo!

L's pooing problem is now being taken seriously by the Drs but I think I need to follow that story seperately. Let me just say for now, that things got really, really bad this year. 

L was in pain as a baby, I wasn't imagining it. We have a diagnosis, but it's being questioned as her genetic dr seems to disagree. She has Elher's Danlos Syndrome. A connective tissue disorder which means her joints can pop out of place easily. She's seen a rheumatologist who gave this diagnosis. She has also had physio therapy  (which made her worse) and then she was referred to a geneticist. She believes that L has Marfan Syndrome, but she's currently carrying out more investigations. Next month L's siblings are going for blood tests to see if the genes are in the family. (sadly, the signs are there but the other two have not suffered so much.)

When L was seven years old her neck became stuck in an awkward and painful position. I have the full story recorded here on the blog, but it resulted in 18 months of treatment including five trips to the operating theatre and two sessions of halo vest wearing. 

When L was six years old she was diagnosed with high functioning autism. She has managed to go through mainstream school and is currently working on her GCSEs. She gets a lot of help at school which I am truly grateful for. 

I will tell you how L gets on from now on. Especially as some of her current testing came up with some issues which involve further hospital intervention.

My Story

I too am a zebra, but it happened suddenly for me. I fell ill on 1st January 2016 and ended up in hospital for two weeks. I was diagnosed with Transverse myelitis as I had lesions (Swellings) on my spine at C4 and T10. The Doctor in the hospital told me this after my MRI. My notes do not say this. The Dr I see now has no record of this ever being said. I'd think I was going crazy but I was not alone when the original Doctor told me this, I have a witness. (I've never had another full body MRI) Only brain ones.

A year later they found some rogue anti-bodies in my blood and I was diagnosed with Stiff Person Syndrome with PERM. It's a rare condition affecting less than 1 in a million world wide. Most doctors have never heard of it. 

This is getting long so I'll fill you in as briefly as I can. Stiff Person Syndrome does was it says, it makes me stiff, I can't bend or stretch without pain. I have a spastic gait which stops me from being able to walk normally, so I use a wheelchair. I have spasms where my body goes suddenly stiff and immobile. or just immobile and I can't control it. 

The PERM is Progressive Encephalomyelitis with Rigidity and myoclonus - Progressive - it will get worse, encephalomyelitis - a demyelinating of the spinal cord (damage to the coating), rigidity - stiffness and myoclonus - uncontrollable jerking. (sounds fun doesn't it!)

I have also recently had a scare when my brain started bleeding for no reason and caused a lump to appear. Thankfully, this has now been re-absorbed, but there is no guarantee that it won't happen again. 

Mum and Daughter

So, to conclude. I am a disabled Mum looking after a disabled daughter. My youngest son is also on the autistic spectrum and has health issues, but we don't have any serious worries about him. 

We have a lot to face and although I stopped writing about L a couple of years ago, I do think her story needs to be continued. This will also give me the opportunity to connect with other chronic illness sufferers. 

Please feel free to browse L's story so far. Particularly if you are interested in halo wearing. It's quite an experience and not one you want to face alone. 

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