THESE CHALLENGES COME TO MIND
- The daily hidden physical symptoms and struggles..
- The challenges with the effects of the disease on and in my body. As well as mentally. Sometimes I forget to get my anti-depressant tablets, and after a week I can really notice the changes. Recently I just crashed and couldn't stop crying. The tablets really help me to manage my life, and have quality of life.
- Constant exercise routines to keep my body functioning. Most days that's between 1.5 hours to 2 hours a day. That's a big chunk out of my day, especially if I'm battling with fatigue.
- Working on looking after all the other health issues and maintenance that anyone would need to look after.
- The down side of the disease such as depression and managing the constant mental reminders of the drastic changes that I've had to make in my life in such a short time. As well as loss of dreams and trying to create new ones that are so different to the ones I had for all those years growing up as a healthy person.
- Adapting to the society I live in. I am lucky to live in a great city that is mostly set up for wheelchair users. However when you live in a wheelchair, you see a completely different world, one which needs changes made frequently to assist those in wheelchairs. There are so many great places that I see, like restaurants, shops, that I can't get into as there is a step. The building code in Victoria (the state I live in), states that buildings that are new built from 2011 have to facilitate structures such as ramps for disabled. However prior to that, nothing is required, even if it's an existing building and they renovate it. An example of that is a pub/hotel near me that renovated recently, however has NO DISABLED TOILET! They didn't have to install it according to the complicated building code. I just don't go there any more.
- Financial concerns and management.
- Medical management.
- Equipment required and the extraordinary cost of it. I recently had a quote for a new wheelchair, and it was close to $49,000 AU dollars!
- Loss of friendships and being alone for much of the time, but I'm not (not lonely). I have gotten used to being on my own and actually love the freedom. I am always busy. In 2018 I hope to get involved with some charity or support work.
- Finding positives.
- Weight management. What a disaster this is. Sadly I don't have the genes for being thin. Not to mention the fact that I don't exercise like I used to in order to burn energy. As well as the medication I'm on and have had in the past stacks on the weight for me. That is really my main battle as the self talk is always negative. Plus all the equipment I use has a weight maximum on it. And so much more.
- Education of the treatments available to treat the disease is very scarce. Neurologists aren't very chatty when it comes to sharing information, and there are only a few sites where you can gain any knowledge.
- The challenges with the effects of the disease on and in my body. As well as mentally. Sometimes I forget to get my anti-depressant tablets, and after a week I can really notice the changes. Recently I just crashed and couldn't stop crying. The tablets really help me to manage my life, and have quality of life.
- Constant exercise routines to keep my body functioning. Most days that's between 1.5 hours to 2 hours a day. That's a big chunk out of my day, especially if I'm battling with fatigue.
- Working on looking after all the other health issues and maintenance that anyone would need to look after.
- The down side of the disease such as depression and managing the constant mental reminders of the drastic changes that I've had to make in my life in such a short time. As well as loss of dreams and trying to create new ones that are so different to the ones I had for all those years growing up as a healthy person.
- Adapting to the society I live in. I am lucky to live in a great city that is mostly set up for wheelchair users. However when you live in a wheelchair, you see a completely different world, one which needs changes made frequently to assist those in wheelchairs. There are so many great places that I see, like restaurants, shops, that I can't get into as there is a step. The building code in Victoria (the state I live in), states that buildings that are new built from 2011 have to facilitate structures such as ramps for disabled. However prior to that, nothing is required, even if it's an existing building and they renovate it. An example of that is a pub/hotel near me that renovated recently, however has NO DISABLED TOILET! They didn't have to install it according to the complicated building code. I just don't go there any more.
- Financial concerns and management.
- Medical management.
- Equipment required and the extraordinary cost of it. I recently had a quote for a new wheelchair, and it was close to $49,000 AU dollars!
- Loss of friendships and being alone for much of the time, but I'm not (not lonely). I have gotten used to being on my own and actually love the freedom. I am always busy. In 2018 I hope to get involved with some charity or support work.
- Finding positives.
- Weight management. What a disaster this is. Sadly I don't have the genes for being thin. Not to mention the fact that I don't exercise like I used to in order to burn energy. As well as the medication I'm on and have had in the past stacks on the weight for me. That is really my main battle as the self talk is always negative. Plus all the equipment I use has a weight maximum on it. And so much more.
- Education of the treatments available to treat the disease is very scarce. Neurologists aren't very chatty when it comes to sharing information, and there are only a few sites where you can gain any knowledge.
CHALLENGES OTHER THAN THE ONES THE DISEASE PRESENTS.
- ALL THE OTHER CHECK UPS - We focus on only the disease and yet we still have a body and mind to take care of.
Although I have this disease, IT IS SO IMPORTANT TO STILL TAKE CARE OF YOUR BODY.
Such as (for women) pap smears, bone density tests, mammograms if over 50. Diabetes check ups and especially the dentist as taking steroids makes teeth very brittle, plus all the other tests especially depending which drugs you are on as they may affect your kidney and liver function as well. Have a great GP who will help take care of all of this with you. Cholesterol and more.
Although I have this disease, IT IS SO IMPORTANT TO STILL TAKE CARE OF YOUR BODY.
Such as (for women) pap smears, bone density tests, mammograms if over 50. Diabetes check ups and especially the dentist as taking steroids makes teeth very brittle, plus all the other tests especially depending which drugs you are on as they may affect your kidney and liver function as well. Have a great GP who will help take care of all of this with you. Cholesterol and more.