Category Archives: disability

I Am the Mother I Am!

Chloe starts Merit her new school in 11 days. It’s a school with 38 students for children with physical or mental health issues. I filled in all the paperwork today and she has had a second look around the school and met some of the pupils. Two of them said they can’t wait for her to start. They think she is cute because she is so tiny and one said they loved her style as she dresses all in a style of her own which is brilliant. Meeting the staff and pupils has made me so much more confident in sending her there. Her being out of education for the last 3 months has been hard work and it will do us both good for her to go back to school. She has a full occupational therapy assessment next week to find out what her struggles are and she is being referred back to physiotherapy for some help with her core muscle tone and pain. I have a feeling she is going to continue keeping me busy for a while yet either her gastroenterologist appointments on top of all this.
Lewis has been away on his first residential trip since Tuesday from the pictures it looks like he is having a fantastic time. I can’t wait to have him back on Friday evening I have missed my squishes with him that’s for sure. Elliot has been put today to buy some Valentines gifts for his girlfriend which is really sweet. His card is lovely, he is growing up way to fast and is now taller than me. He will be 14 in April and I still feel 20 so it doesn’t make sense to me.


There have been times in the last few months where I have really doubted my parenting because of what has happened with Chloe, I feel like I sent her into the lion’s den when I sent her to a mainstream high school. Between her being Transgender and all of her health issues I did think it probably wouldn’t work put for her there, but I never thought it would fall apart so badly and so fast. I have tried everything to help her for years and have been turned away so many times by people saying they can’t help her or she doesn’t fit their criteria (must be my least favourite excuse). Now I have an army of professionals helping and I couldn’t be more grateful and to hear them say over and over why wasn’t she helped before, that she should never have been allowed to go to a mainstream high school and that they can see how hard I tried eases my worries a little.
So, I have looked at it this way

I am the mother I am,
I can’t be anything more
I have loved them, fought for them
I have knocked on every door.
I can’t be a superhero
I can always do my best
There are times I need help
And times I need a rest
There is no shame in not coping
No shame in needing to cry
I have never given up
Just harder I try.
Even if they never know
All the time and energy and feeling lost
To get them the best I can get
It was always worth the cost.

Life and all that jazz.

Robyn prefers to be called Chloe and after 18 months of her being consistent
in this I have decided to try my hardest to call her her preferred name. She
hasn’t attended school for a long time now due to illness and we have been
offered a place in a Pupil Referral Unit for children with mental health needs
and medical needs. It would be great to get her back in full time education for
her social needs as well as her educational needs. It’s is over 4 miles away so
she would need local authority provided transport and that makes me nervous. I
don’t relish the idea of having 3 children in 3 different schools that’s for
sure.

Chloe had her dental surgery in December, she was brave considering she
ended up with a mouth full of stiches after they cut into her gums to remove
impacted teeth. She struggled with eating for a few days, but she muddled
through and was healed enough to enjoy her Christmas dinner. She has an
Endoscopy tomorrow to look for reasons for the huge increase in her reflux
symptoms she has had since birth, she vomits daily sometimes numerous times a
day and has burning pain in her chest all the time. They will look for any
internal issues and take biopsies from her stomach to see if they can find
anything. She has been attending Cognitive Behavioural Therapy for over a month
now and the therapist suspects she has Agoraphobia which causes her anxiety. This
is why she has struggled so much in a high school with over 900 students. We
hope with the CBT she can earn to manage her anxiety and get back into
mainstream school in the future.

Lewis turned 9 yesterday and the older he gets the more I see the person he
is becoming; he is funny, kind and cheerful which is amazing considering the
medical and educational problems he has encountered in his life. He is going on
his first school residential trip next month and I am nervous about it, but he
could not be more excited. Its only for 4 days but I will miss him and his
cheeky face. He has overcome so much, from the premature baby who wasn’t expected
to survive the first night, who was diagnosed with brain damage at a few days
old and couldn’t eat or drink without tubes fully until was 2 years old to a 9
year old who works hard at school and makes me laugh every day. He had a great day on his birthday dressed up as Woody from Toy Story and playing with his friends.

Elliot is a fairly typical teenager; he is at times grumpy and shuts himself
in is room on his PlayStation and at other times he watched films with us
eating sweets and can be an excellent big brother. He works hard at school and
his reports always show he is well behaved. I am constantly grateful he is healthy,
and I don’t have to worry about hospital appointments and operations for him.
He gets and needs a lot less time and attention from me which makes things easier,
but I do feel guilty as I think he probably needs more from me than I give him.
He has tolerated a lot with the things that go on with his siblings and my
health, he never complains when I am busy with everything and always tried to
be kind and helpful when Chloe has an operation or appointments and is taking
up a lot of my time. He also has had to cope with big changes to his life with
Chloe and mine and his dads divorce, he makes me proud.

It’s been a busy few months and it’s not looking any less busy in the future;
we have an appointment in London at the Gender Identity Service for Chloe at
the end of this month then she will be getting her first removable brace not
long after that. There are a few hospital appointments for me and the process
of getting Chloe into her new school and then hopefully we will get a few months
of peace.

 

 

It’s the most stressful time of the year.

For Robyn the last few months have been tough, her health has been a big issue as has her anxiety. Moving up to high school has caused a lot of issues, she now isn’t attending school as the impact of the huge change it presented caused her gastrosophageal reflux disease to become much worse. She has been vomiting and feeling ill for a few months. She was absent from school ill and being sent home so often the school agreed it would be better for her to do some online schooling until after Christmas, we will review this situation with support from school after Christmas. She was referred for a wheelchair by her peadiatrition to help with her joint pain and tiredness and we are now waiting for the wheelchair to be delivered.

We have changed her medication with the help of a peadiatric gastroenterolgist and are waiting for an appointment for an endoscopy with biopsies to be done under general anaesthetic to try to find out what is causing the reflux to become so much worse. They feel it could be allergies but it also could be her anxiety causing the increase in severity. This procedure will likely happen in December or January and will most likely be a very stressful time for Robyn as she gets very anxious about medical procedures. She has been referred to Occupational Therapy to be assessed for aids to help her at school and at home. She is tired much more often and in pain, uncomfortable and struggling to get to sleep at night. She has also just started Cognitive Behavioural Therapy with CAMHS to help with her anxiety and we hope this will also help with her reflux and tiredness. The therapist after assessing Robyn feels she may have Agoraphobia which is causing most of her anxiety. She anticipates having a diagnosis for her mental health issues in a few weeks.

She also now has a date for removal of 4 impacted teeth which she will be under general anaeathetic for. This involves cutting into her gums in 4 different places and removing them and stitching her gums back up. She will not be able to eat solid food for around a week. Her surgery is in less than 2 weeks and she may need to stay overnight, trying to arrange childcare for the other two kids between Steve being at work and me being at the hospital for Robyn is a bit of a nightmare. The day before her surgery we are due in London for an appointment with the Gender Identity Service to discuss the next steps for Robyn. It’s going to be a busy month as Robyn also has an appointent with respiratory consultants and then there is all the usual mayhem of December with school performances and Christmas plans.

Another huge complication for Robyn is that puberty has arrived, this means we need to start the journey for puberty blockers which is what Robyn has said she wants. It’s a long process and requires blood tests and bone scans before we can get to the stage that she can be prescribed puberty blockers. Once they are prescribed we have to hope that our gp practice will agree to administer the blockers as many doctors are not comfortable with this. She is so worried about puberty, these changes are very stressful for any growing young person but for a trangender child this is a whole different story. She is scared that her voice is going to change and that she is going to become a man. She said to me that if that happens she wont be her, she wants to be Chloe, a girl who will become a woman, not someone who is growing into a man. Although i cannot possibly understand how this feels to her logically i can see that the idea of your body becoming more and more masculine when that feels so wrong must be so upsetting and stressful. I can’t do anything other than reassure her that we will do everything we can to help her.

I have never wanted to change things for one of my children so much, i can’t begin to understand how all of this stress is affecting her. Life just keeps throwing things at her and i want to just take it all away for her.

Feeling Resentful!

There is a saying I have seen many times it goes like this, ‘The thing about pain it demands to be felt’, it’s so, so painfully true. In the last few days I have gritted my teeth, lost my patience and cried when no one was around. There are times when the pain can be hard and then there are times like this, times when this pain makes me sad and tired. It’s so all consuming, so overwhelming that it’s hard to focus on anything else for any length of time.

I want to scream, to blame someone and have someone take it all away. It makes me grumpy and I don’t like who it turns me into. I write poems about how much I hate it and I try to distract myself with anything and everything I can think of. I’m just so angry right now I’m sitting here in too much pain to sleep just feeling the anger build up inside me. This isn’t who I want to be, I believe I’m a nice person for the most part but I don’t feel like being nice right now. I feel like shouting at everyone, smashing things and just generally having a huge tantrum.

Sadly, I’m not a child and that sort of behaviour isn’t acceptable for a 31-year-old mother of three who is supposed to be responsible and mature. I just don’t want to be the person I’m being right now, I just want to be less grumpy and angry. I keep trying to remind myself that this has happened before on many occasions and it won’t last forever it just feels like it will. So, I guess I’m rambling here as a distraction and because putting it down on paper (well screen) is in some way a relief.

So yes, the thing about pain is it demands to be felt I just wish I wasn’t feeling it so much right now!

This pain is unbearable, dragging me down

Drowning me slowly, sucking the life out of me

Exhausted bitter and sad I feel less

Less of a person, less useful, just less

Pain overwhelms

It steals, Its spreads its long dark fingers into every inch of your life

It snakes its way into you constricting everything taking away your breath

Its insidious and I’m resentful

Resentful of its dominance, Its vice like grip on my body

Just resentful.

More and More Medical Misadventures

My permanent sacral nerve stimulation device was fitted almost a month ago and I’m going through the settings to find the best programme for my bladder to work properly. these implants are very expensive and I am very grateful for the opportunity given to me by the NHS to have a life changing device. I am already feeling the benefits of much less pain from my bladder which is fantastic. I carry my battery around with me all day everyday in case I need to turn the device off at any time. It’s become second nature to have it in my bag wherever I go.

remote

Life with children with EDS can be at times stressful in the last few weeks we have had 3 opticians’ appointments with Robyn due to a turn returning in her left eye. She had new stronger glasses to try to correct the turn but this has been unsuccessful so she has been referred back to the hospital to see if we have any options left to try to fix the turn. The appointment came through for next week already which is fast. Surgery is an option but Robyn is not keen on having a third eye surgery. I also found out she doesn’t have proper 3D vision as she should have and there is nothing that can be done about it which is a shame but as she will never have been able to see any differently, she will never know any difference. She has 2 hospital appointments in the next month for her dental problems. She is waiting for surgery to remove 4 teeth that are stuck up in her gums which you can see in the picture below, then she will have 2 years of braces to try to get herteeth into the normal positions. She is also being referred for counselling to deal with her anxiety which she has suffered with since she was very small. So, shehas definitely been keeping us busy lately. robyn teeth As for Lewis he has been referred to Endocrinology to see if he fits the criteria for growth hormone treatment as he is still groeing at a very slow rate. He was also diagnosed with severe constipation due to EDS this is a common problem for EDS patients as the condition can cause the gut to slow down its usual processes. He has been prescribed two medication for long term use. He had a week off school while we gave him a ‘clear out’. This is likely to be a lifelong problem for him; I know that problems related to them having EDS will probably crop up throughout their lives which is a shame for them both as the condition can affect many internal organs and many of the joints in the body. Robyn’s pain has been increasing lately in her legs so we are going to try some new physio exercises and I have been trying some massage to see if that helps. Every night she takes a hot water bottle to bed to ease the pain on some of her joints. I wish I could take away all of the problems the kids have, give them a more ‘normal’ childhood. They just get on with it and other than the pain Robyn suffers they hardly complain about all the problems they have.  Im proud of how they put up with all the medication they have to take and the symptoms they put up with. All three of the kids are good, kind and helpful and I’m proud of them all.

Monday is fast approaching, as dramatic as it sounds Monday could change my life. I’m due to have surgery to fit a permanent Sacral Nerve Stimulator after finally getting a diagnosis for my bladder condition ‘Fowlers Syndrome’. A few weeks ago I had my trial of the device and I was amazed by how much it changed my bladder function. After 4 days I was almost pain free in my bladder and it was behaving like a ‘normal’ bladder. I even went catheter free for 10 days. If you have never had to insert single use catheters yourself multiple times a day you could not possibly understand how painful and inconvenient it is. The relief I had for those 2 weeks when the trial version was in was wonderful. The surgeon informed me that this device costs 15,000 pounds and I can tell you I could not possibly be more grateful for the NHS for the chance to get this surgery. After my trial my surgeon lost funding to provide this device to bladder patients, they managed to fix the issue within 2 weeks. I was devastated when I believed I may not get this surgery for a long time and this helped me to realise how much I wanted this surgery. I feel so lucky that I am getting it so quickly after waiting so long to get a doctor to take my bladder problems seriously in the first place.

There are a few drawbacks to living with this device inside me for the rest of my life, I will never be able to horse ride, skydive, play any contact sports or go skiing. None of these things will be a great loss to me if I’m honest, I wouldn’t be doing any of these activities anyway. The things that will affect me are the fact that I can never have an MRI scan again, I have needed many MRI scans in the last 10 years so not being able to have one may make it harder to get treatment for some joint problems. I will also have to wear a medical alert bracelet every day to ensure medical professionals are aware of this in case I am ever admitted to hospital and cannot tell them I have the device inside me. The device is known to set of security alarms in airports and more embarrassingly I imagine, in shops. You need to carry a card which states you have the device implanted so you’re not accused of shoplifting every time you walk out of Asda with your weekly shop. Nearby household items like fridges which have magnets can cause shocks through the lead inside your body which sounds like a super exciting way to go through life. I might get a painful shock every time I get the milk out of the fridge for my cuppa. Hmmmm considering the number of cups of tea I drink a day it maybe best not to think about the chance of that happening too much.

I weighed all of this up for a while, the positives do outweigh all the negatives and possible side effects. So, from Monday all being well I can get one very important change to my life living with Ehlers Danlos Syndrome and the complications and chronic pain it causes. I’m excited, hopeful and very nervous all at the same time. If I think too much about all the complications and surgeries I have had in the last few years it makes me feel very concerned for Robyn and Lewis and their future with this condition. I have decided to look at it in a different light, in the way that I am trialling all of these surgeries and devices that they may need in the future and it will make me more able to comfort them and understand what they go through if they ever do need any of these. So, I’m going to spend my weekend nervously and excitedly looking forward to Monday, see you all on the other side. 🙂

Decisions, Decisions, Decisions.

Life throws me curveballs all the time and Im proud to say most of the time I step up and do what ever I need to do but lately it seems much harder, the pressure much heavier. I hate making decisions, being a grown up is hard at times.

I had thumb joint fusion surgery in November and the surgeon believes I am allergic to the metal in the plate or screws they have put inside me. This means having another surgery to remove the metal sometime in the next few months and hope that the bones are fused enough without the metal. The idea of going through the surgery again frustrates me hugely it has been painful and frustrating. The problem is that I am due to have trial Sacral Neuromodualtion surgery in January before a permanent surgery to fit the permanant device in a few months. Now I am unsure if I will be allergic to the battery I will have implanted after the trial surgery in the permanant surgery. This is an example of what the surgery is.

sns

If I dont have this surgery I will have to use catheters for the rest of my life. I can have botox every 6 months but the risk is I will have to use more cathters than I do now. The best chance for me is Sacral Nerve Stimulation it has a 70% success rate and has been a miracle for some people.

I don’t want to have to take these kind of decisions, I have held on to this surgery as the best possible solution to the painful spasms I have everyday in my bladder and the end of having to use catheters every day. My future without this surgery is bladder incontinence, constant bladder infections, possible kidney damage, pain and a permanant catheter. So yes I want this surgery, I want to give this a chance. So I am trying to decide whether to risk having another piece of metal implanted into my body that I could be allergic to. It’s a risk but the rewards could be amazing, I wish someone could make this decision for me . I wish I could pass the choices on to someone else and let them take responsibility for whatever happens.

Because knowing you will only have yourself to blame if something goes wrong is a feeling that sucks! But doing nothing and wondering if you passed up a chance to make things better sucks too.

I want to be free of the feeling of anxiety that comes with making these choices, its not going to happen though. So I’m going to make the choice and be responsible for whatever the outcome is because if there is a chance I can be better even a small one then I have to give it serious consideration. Like I said being a grown up is hard and this is a decision I have to make alone, with support but still alone.