Living with a spinal cord injury

One of the things that will not realise to start with is that anything that gets damaged below the level of your injury may take longer to heal than normal, this is because your circulatory system is not working correctly. For instance if you stub your toe (you may not even feel it) and get a blister then it can take months to heal.

You must ensure you try to take good care of your skin, keeping an eye out for pressure sores as these are potentially really serious.

Below are a list of tips that have been really useful for me. They will not all be useful for you as everyone is different

1. Door widths matter

We have had the door frames removed or altered on a number of doors to make it easier to get in and out

2. Sometimes you have to go backwards

There are occasions where it is easier to go backwards in your wheelchair than forwards, particularly if there is a tight corner you need to get round and there is also a path straight on. This is the case in my house and I always have to go to the kitchen backwards.

3. Wheelchair skills

Get yourself on a wheelchair skills course with The Back-Up Trust. It is really useful and helps you get up and down kerbs and over different surfaces and inclines.

4. Access to work scheme

If you are in employment then your employer must make reasonable adjustments but sometimes you need more significant adjustments. The access to work scheme helps cover some of the cost so your employer has to pay some of it and they pay the rest

5. Smart homes are useful

Being able to control lights etc without needing to get up and flick a switch can be really useful at 3am when you’re doing a catheter

When you first get diagnosed / realise you have an SCI then it is a lot like grief, you are sad and angry that life is now different. That you may have lost the ability to walk / move and even talk. You are now disabled and that takes getting used too. If you can walk, you are likely to feel guilty that you walk and others cannot. If you cannot walk you have a steep learning curve, how to get around in a wheelchair, how surfaces make such a difference and how some inclines that you used to walk up without even thinking about it are now not currently possible for you or are ridiculously difficult.

Regardless of where your injury is the one thing that is almost universal is you are likely to have to have a bowel management system and bladder management system.

For me this was the biggest challenge in coming to terms with my SCI. Your routine will likely take an hour or so every day either in the morning or for some people in the evening.

One of the first things you learn about SCIs is that everyone is different, depending on where the level of injury is on your spine will affect what potential level of paralysis you may have. The higher up your spine the more of your body may be affected. There is one additional different categorisation that affects your SCI that is whether it is complete or incomplete. This will affect what your prognosis is likely to be, essentially complete means the chance of your paralysis improving is very slim but if you’re incomplete there is a chance that you may improve. Everyone is different and just someone else has the same level of injury eg T10 Incomplete doesn’t mean that you will both end up with the same level of function. Don’t think that if your body is not allowing you to do the same as someone else that it is your fault.

Hi, I am a 45 year old male who had a heart attack and then a week later had a series of cardiac arrests (luckily my wife did CPR for fifteen minutes and brought me back from the dead whilst waiting for the emergency services). One of the cardiac arrests caused a blood clot to go down my spine and caused a t10 incomplete spinal cord injury. This blog shows how I live with a spinal cord injury.