How do you deal with having MS and a young family?
Well, I struggle - I have two children, my eldest girl is 5 and my youngest boy is 4 and they are absolute terrors - as in most young children every day is always at 100 miles per hour. How do I deal with this and the fatigue...………. well I don't know sometimes, but all I suggest is routine routine routine.
First of all, I try and conserve my energy everyday, this maybe as little as sitting down with the kids and reading them a story instead of playing games or chasing them around the house.
Secondly, I always make sure where I can I go to bed at a reasonable hour, 8-9 hours sleep is my minimum to be able to function the next day. If I can get more in than even better. On this point at weekend I try and get an hour's sleep during the day. Thankfully I have a very understanding wife who gives me that option (I always return the favour if needed).
Thirdly, I try and have a high energy diet - granola, cheese berries etc, don't miss meals. If I miss breakfast I might as well right off the rest of the day, I'll go into this in more detail in future blogs.
Finally I am as honest as possible with my kids, I talk to them in basic terms that daddy is not very well (If I am having a bad day or a relapse) and I need them to help me to get through the day, and they honestly love helping - it maybe something as small as putting there toys away or maybe painting tomorrow when I am having a better day, but all in all every little bit of energy save on one day is a chance for me to use more energy the next and enjoy and play with my children.
Pretty straightforward but it gets me through everyday and has done for the past few years.
Saturday, March 2, 2019
Sunday, February 24, 2019
The beginning!
Ok, a little bit about myself, I am 37 years old and I living in the UK. I have Multiple Sclerosis and was diagnosed in 2009. My medication currently is Gileyna, previously I was medicated with Rebif Interferon and then moved on to Tysabri. I have had 3 major relapses in the last ten years.
I grew up like many people with a love of life, sport, people and drinking. I was an active sports person, playing Rugby, Football and Cricket. I took part in several half marathon and 10k fun runs.
In 2009 I was getting ready for the new rugby season and in the first preseason match I played I made a break and passed the ball to my colleague, as I passed the ball I was tackled from behind and fell awkwardly on to an opposing player - unfortunately I hit my head quite hard and came off the pitch. Over the next week or so I experienced concussion symptoms, but as I had been concussed several times before in my career never really thought about it much and kept going with my normal daily life. The symptoms however would continue for more than three weeks, and I was also experiencing bad double vision. At this point I thought I better see a professional, I was in hospital within hours on a neuro ward and over the next two weeks had various tests but nothing was diagnosed. At this point I was allowed to leave the ward and went home.
A few months past with nothing seemingly wrong with me, and I returned to rugby and I took part in training one evening, I felt really dizzy and something new happened after ten minutes of running - I I had no energy to walk and was struggling to keep my body weight up, I managed to make it home that evening went to bed and woke up the next day and tried to get out of bed, I stood up and felt like I had no energy again in my body to stand-up, at this point I collapsed and was blue-lighted to hospital, I again went though several tests including and MRI a few days later a neurology specialist came to my bed and gave me the diagnosis - I thought my life was over on hearing the words Multiple Sclerosis. I called my partner and asked her to leave me (she didn't) and then broke down to my family that at 27 I had MS and my life was over.
That's my story and I will add to this going forward, and how I learned to deal with my issues and how I changed my life.
S
I grew up like many people with a love of life, sport, people and drinking. I was an active sports person, playing Rugby, Football and Cricket. I took part in several half marathon and 10k fun runs.
In 2009 I was getting ready for the new rugby season and in the first preseason match I played I made a break and passed the ball to my colleague, as I passed the ball I was tackled from behind and fell awkwardly on to an opposing player - unfortunately I hit my head quite hard and came off the pitch. Over the next week or so I experienced concussion symptoms, but as I had been concussed several times before in my career never really thought about it much and kept going with my normal daily life. The symptoms however would continue for more than three weeks, and I was also experiencing bad double vision. At this point I thought I better see a professional, I was in hospital within hours on a neuro ward and over the next two weeks had various tests but nothing was diagnosed. At this point I was allowed to leave the ward and went home.
A few months past with nothing seemingly wrong with me, and I returned to rugby and I took part in training one evening, I felt really dizzy and something new happened after ten minutes of running - I I had no energy to walk and was struggling to keep my body weight up, I managed to make it home that evening went to bed and woke up the next day and tried to get out of bed, I stood up and felt like I had no energy again in my body to stand-up, at this point I collapsed and was blue-lighted to hospital, I again went though several tests including and MRI a few days later a neurology specialist came to my bed and gave me the diagnosis - I thought my life was over on hearing the words Multiple Sclerosis. I called my partner and asked her to leave me (she didn't) and then broke down to my family that at 27 I had MS and my life was over.
That's my story and I will add to this going forward, and how I learned to deal with my issues and how I changed my life.
S
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