Category Archives: disability

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.