Do I have to have a custom built wheelchair 

Do I have a custom-built wheelchair

Imagine this as a scenario! You are going about your life as anyone else would and something dramatically changes!

No warning and no time to plan! You end up in hospital! No clue what has happened! You know something is wrong ! But you don’t know what!

For many people going into a chair that is the exact experience. Let’s be honest who sits down and thinks I am just going to keep a few thousand aside in my bank just in case I need to redevelop my life around a disability.

I know I never! If you are reading this chances are you didn’t either. So initial shock has passed and along come the next stage.

Planning
  • What to do now,?
  • what do I need?

It’s all perfectly expected, and a natural fear of the unknown is common. Here in the U.K. We get the privilege of the NHS It is a privilege! Because in many countries this is not the case.

So you now know you need a wheelchair and you need one soon. An absolute need to live the best life possible. Something light enough to manoeuvre around in and don’t forget getting in and out the car.

Your new wheelchair is not just an item that gets you from A to B it is now apart of you. Annoyingly it also becomes your new descriptive characteristic. So yes it’s an important purchase.

Cost
  • So what do they cost?

Well honestly a few grand to be on the safe side. They are custom-built to your needs and everything down to the wheels is an added extra.

  • The big question is do you have to buy new?

Well for me that was not an option! If I had my way I would buy the Carbon Black, it’s amazing, light, sexy and expensive. If I was completely honest I would have struggled to go for a lower end spec chair from Bromkin, RGK or maybe Quickie.

So I turned to the internet and to be exact EBay. I knew my measurements and what I was looking for. The big things you need to know is leg, hip, and seat size.

If you look at chairs that are fully adjustable you will be on a winner. It is a case of spending the time and making sure you are happy. Don’t forget to ask other people what they think. You are not just buying a wheelchair you are buying the one thing you will use everyday and all day so it has to be right.

So you purchase a chair for a fraction of the cost and you may want to just put a personal touch to it! Your options are endless with some new casters that cost a few pound from a skate store or eBay. Kids scooter wheels are normally perfect.

Maybe you want to give a whole new style and refurbish it, look at sites like Pimp my chair they do all sorts from nice straps to complete back and cushion . But at the same time you may not need to do anything and it may be perfect with a few settings adjustments.

This option may also leave you a fund for accessories like the FreeWheel. I purchased a fantastic Kuschall wheelchair that I have had for three years and believe me I have put it through its paces including taking it down flights of stairs.

I have upgraded the wheels to spinergy, replaced the casters and lowered the back rest but initially all I done was tweak the settings to fit.

By going second-hand I saved an absolute fortune and would recommend you shop around before shelling out loads of cash if you can’t afford to. Since then I have now purchased a second chair that I used just around the house, again cheap and cheerful but does the job.

I know for many the importance of a custom fitted chair is unquestionably vital but for some it is just not in the budget and it’s those people like me that find the journey the biggest struggle.

Disability- lifestyles and life changes. 

disability lifestyles and life changes.

There are several types of people suffering with disability, those born with a disability, those who suffer from an injury and those who suffer from an illness.

If you weren’t born with a disability as many aren’t, it can be a struggle learning to adapt and enjoy your new lifestyle. This will lead to times of frustration, sadness, and despair. It shouldn’t have to, you are the one in control and you do have the power to succeed. I get it! Yes! This is Easier said than done. Yes! We all struggle. Yes! It is perfectly natural however it’s important to find your new way of living. Your task is finding a way to make ‘you’ happy.

Coping with your emotions

It’s hard and even more so if an injury or illness is keeping you from doing the things you enjoy. You will start experiencing a profound impact on your emotional and mental health.

For many people there is the offer of counsellors to help them sort through their emotions. Some like myself this is not necessarily on offer so I turned to friends and mentor programs. Programs like what is offered by the BackUp Trust.

Truth is you just need to find people to talk through your feelings with. It helps if they have a grasped understanding of your situation. There are loads of foundations and organisations that can help in this area for example Limb Power help with individuals that have lost a limb or have limb impediments. I have recently been a guest at the Katie piper foundation. They support burn and scaring survivors. The foundation and the patrons are fantastic and supportive.

I was very lucky as I met people through sport and those people introduced me to other people. I joined my local baseball team. (Archers Wheelchair Basketball) This helped loads, my journey from there has been positive and now I am in a position where I can offer others a bit of support.

Through sport I found confidence and from confidence I found will power. Before I knew it I was back in the saddle, I was planning adventures and deciding what I wanted to do next.

limitations

Your limits can be a massive issue. Your body’s new limits is something you will need to explore and also experiment with. This is the area however that will make you angry and at times irritable. You can gain a lot of benefits from working with physical or occupational therapists to help you find new ways of doing things. Effectively using your body to its best potential will be how you overcome the limitations presented to you. For all of us the hardest thing to beat is our own frustration.

Be patient with yourself it will come in time. We all try we all fail but if you don’t try then you have failed before you begin.

Coping financially

Now this is the area of real pressure. It comes with its own issues and I have often stated that no one plans this life changing event. Often a recently new disability will keep you from working. This could possibly be long or short-term so you are effectively already starting on the back foot.

I know here in the U.K. You can seek benefit support and in other countries there are other such assistance. The application process can be lengthily and often complicated. You may even get rejected on the first attempt but the hard work is worth the effort. Remember two things:-

  1. You need this initial support and never be too proud to ask for help. One of the biggest mistakes that many people do in my opinion is to fund the new unexpected out goings on credit cards or loans. This is the voice of experience.
  2. Financial hardship is common, you are not the first. Sometimes the sudden lack of income can put massive pressure on an already pressured situation. You don’t have to face this alone and you can visit well run organisations such as Citizens advice or stepchange to seek financial guidance.
Finding new passions and hobbies

Hobbies will be very healthy, your life may have changed due to disability but your life style doesn’t need to. If you are unable to keep working in your current job try seeking a further education.

Sometimes hobbies have to change. I was a runner before my wheelchair but I found new activities such as wheelchair basketball, Handcycleling,  wheelchair rugby,  wheelchair squash and of course I became a blogger.

It is absolutely vital that you find new ways to enjoy life. There are plenty of hobbies and activities you can do. All you need to do is just be willing to explore your boundaries. Step outside the box.

It is hard to adapt but trust me you will find away. When I developed my disability so many people told me what I couldn’t do but all I could think about was “but why not?” So I decided to try to find a way to do these things for me that became my hobby! And I love it…

The journey from where I started to the place I am now has been long, painful and frustrating. I have had to overcome, push my limits and rediscover who I now am. People would say it’s not about the chair you are the same old you. No I am not I am a new me. I laid the able version of me to rest and embraced the version of me that has a disability and decided that if this was the cards I was dealt then I am playing them my way. Keep hope, keep faith and look to those around you for the support you need. You can do it and you will…

My life With CRPS (complex Regional Pain Syndrome}

What is CRPS? (complex Regional pain syndrome).

CRPS! Well it kind of is what it says on the tin really! A complex condition that results in the suffer experiencing unbearable pain. Caused by the neurological system and normally effecting one limb. It is rarely in two or more but definitely possible.

I have been living with this condition for just over 3 years. A condition that has affected my mobility in my lower limbs and has meant I have had no choice but to use a wheelchair.

At first I was full time in the wheelchair however recently I started to use crutches. Its great to be up on my feet more but I get tiered very quickly and the pain never goes away and I mean never.

Not only has the condition meant I have struggled to walk but I also get spasms. The Spasms are caused by a condition that can be related to CRPS, called Dystonia. These, sometimes very aggressive attacks, effect mostly the right hand side of my body and are somewhat unpleasant.

The medication Gabapentin helps to control these very uncomfortable and painful symptoms but unfortunately don’t stop it all together, however I feel they are reduced dramatically.

So my legs don’t work and I use a wheelchair!

Not so bad! I mean when people look at me thats generally what they see! a guy in a wheelchair. Well maybe this is a good time to mention I also suffer because of it all a significant reduction of control in my bladder. Between the CRPS and the cocktail of drugs I take I have Recently been diagnosed with Sensitive Gastroenteritis.

Now if you followed the link you will know that i am basically pron to bowel infections. during this time I cant sustain my levels of Phosphate. This is called hypophosphatemia.

So I am stuck in this fantastic circle.

CRPS has caused Dystonia. the issues with my lower mobility has resulted in Gastroenteritis. when i get flare up of that I then suffer with Hypophophatemia that causes high level stomach and muscle cramps. Cramps cause spasms and spasms are caused because of the dystonia.

Yep CRPS sucks but it could be a lot worst. what i have had to do is learn to adapt. and adapt i have!

CRPS for many “professionals” is considered as a cop out diagnosis. Not recognised as being a real disability, Well neither is ME and that affects 1000’s of people every day and is very real.

I also want to mention that it was not that long ago that if you had epilepsy you where executed for being possessed by witch craft. And dyslexia was not even known, you where just stupid. So I think it is fair to say that science and medical opinions change and doctors are not gods and not always right.

So what is my take on CRPS? Well for me it’s hard to explain because unless you are in the situation it’s not an easy thing to describe but I will try.

Basically

It’s all about signals and receptors in the body not communicating in the right way.  For example if a sensor on your car starts to malfunction it may send a signal to light up a warning light on your dashboard. It can even cause the car to lack power or stop altogether.

Now there is nothing mechanical wrong with your car. It’s a simple electrical fault that causes a whole load of problems. Anyone who knows cars and electrics will know this can be a nightmare to find. Well that is basically CRPS!

The sensors in the body that detect pain starts sending false signals and sends false messages to the brain. And as in your car can cause a world of problems for the person trying to live with the fault accept you can’t just replace them like you can on a car.

CRPS can be brought on by a number of things. An old injury or even an illness such as shingles. There is no cure and the use of medication  is designed to reduce the effects.

For me even though my condition has effected both my legs I am in a much better place than most. By using a chair I can live a fairly active life. I do sport, train, and I work full time. I’ve been very successful in all areas and have been very lucky.

I adapted

I had to make my house wheelchair friendly.  Purchased a new car that is automatic. Changed my job so I could work in an environment that can accommodate the wheelchair. these are just the big changes

Things have been tough. It has had a dramatic effect on personal relationships and friendships. At times I have felt very lonely. I have struggled with depression and I have struggled with emotions. Suffered with anxiety because of how these symptoms effect my everyday life. I just do my best to put all this aside and concentrate on the positives.

So ‘how’ do ‘I’ live with CRPS? Well I take each day as it comes and I think that is all any of us can do.