DAILY HIDDEN SYMPTOMS OF HAVING NMO
- Nerve pain. I constantly have nerve pain all up my left arm, underarm and side of my torso especially my back. This feels like severe sunburn all the time.
- The palms of my hands feel like sand paper (to me) and tingle all the time but my skin is very smooth. I have very little feeling in them anymore and rely on my eyesight and the back of my hands to do things and feel fabrics etc. I can feel varying degrees of heat and cold. I can't do things anymore like do up my bra. A big thing for a woman!
- I have varying degrees of depth of feeling throughout my body. My upper body isn't bad but from my waist downwards it gets worse. I can't feel much of my buttocks and legs and so consequently have many bruises on me as I drive into things with my wheelchair accidently and don't feel as much pain. I drove over my feet with my new wheelchair 10 days ago and when we weighed it a few days later, it weighs 153 kg!!! No broken bones just some bruising. Thanks for Arnica oil.
- My arms and hands regularly go to sleep when I'm lying in bed. That's very annoying! The more I do upper body weights and chair boxing, the more numb my arms and hands are for hours on end during the night. This also happens when I'm taking photos.
- I am legally blind in my left eye from all the Optic Neuritis attacks over the years. The Optic nerve is so damaged that I can't see definition out of that eye eg. peoples faces, but I can see colour and roughly describe a room or surroundings. I'm used to it now but initially it nearly drove me crazy. It felt like I had that gooey "sleep" in my eye all the time. This makes reading more difficult as that lens is plain glass. I have a blind spot in the left side of my vision so need to be careful when crossing roads or if someone is o my left side.
- Incontinence in my bowel and bladder department. That means I have a catheter called a SPC or Supra Pubic Catheter meaning above the pelvis. This is basically a hole just below my belly button where this tube goes straight into it and into my bladder. Then what's called a "flip flow" attached to it, and then a "day bag". The catheter is changed every 6 weeks by a nurse who comes to my home. And the day bag and flip flow I change once a week myself. It's an amazing system and work brilliantly for me. The problem with this type of system and when once becomes incontinent is that as the bladder drains all the time, and is really made up of a muscle, if it's not being used and filled up regularly, it shrinks to the size of a walnut. Mine started to do that after 3 years and it was almost impossible to insert the tube every 6 weeks as the end of the catheter would hit the wall of the bladder and be very painful and uncomfortable. It was a concern. So the flip flow is a valve so you can turn the flow on and shut it off. That enables the bladder to fill up and the muscle to work. Then when it feels full I open it up or just do that every 1/2 hour. It's made a huge difference. Sadly though it took 3 years for someone to tell me about it and explain it properly.
- Muscles spasms in my legs and buttocks. These will start for no reason at all and can go on for up to 6 or more hours. No amount of Valium or Baclofen (drugs I take for spasms) will ease it. The Valium will knock me out which just helps to get some sleep. This will happen for no reason, and often at night when I am sleeping.
- Shocking stiffness in my legs especially my left leg. This means that it's near impossible to bend my knee and my leg or legs will lock. That means when they go out straight (and that happens involuntarily because they'll just shoot out themselves which is very painful), all the muscle power will not bend them. Constant exercise is the only thing that will keep my legs a little more flexible, but that means I have no life as my exercise regime to keep that going takes about 1.5 hours every day to do so, as well as all the normal things I do in my day like tidy my unit, make my bed, cook my meals, wash catheter bags, call companies and manage my needs etc.
- I do upper body free held weights almost every morning after breakfast every day, sometimes every second day if my muscles are sore, just a 20 minute routine of 12 reps per exercise, 2 sets each and 8 different exercises. One is to prevent "tennis elbow" due to transferring and having to treat my arms like gold as I need them so much. However my right muscles around the scapula or top back shoulder area get so tight and painful for days (because of the exercise but also due to the weird signals that the muscle sends re pain to the brain and backwards (the circle goes on and around all the time), that I am in pain for days and have to take additional Valium at night as my back muscles spasm all night and I don't sleep well. A small things in the grand scale of problems that people have, but in my reality, world and at that moment huge as I don't rest well and have to fight off that grumpiness, "why me" question and attitude and the depression demons that creep in so easily. These kinds of things can be the catalyst to then honing in on all the nerve pain, muscle stiffness and spasms, bowel issues and catheter problems that mount up to battling that depression darkness for days on end.
- Very stiff legs and leg spasms with the stifness in my left leg getting worse. That's due to the confused messages from the spinal cord not lack of exercise. - I have a machine called a Motomed which enables me to drive up to it and sit in the chair, strap my legs onto the pedals and as it's electric I can then move my legs. I HAVE too do this EVERY DAY FOR 60 MINUTES or else my legs are very stiff.
- My nerves in my coccyx area (my tail bone as we say) become very sore to the point where it feels as though I've split the skin and I can't lie down or sit as it's so painful. This will gp on for days and appear for no reason at all.
- Certain muscles shorten from sitting for prolonged periods such as the hip flexors, or the ones at your groin at the front from your hip to the top of the thigh. I have devised certain stretches and exercises to do if not daily then every second day to stretch them. Otherwise when I lie flat on the bed my legs shoot out rapidly in front of me and it's very painful. My left leg (the weaker of the 2) then locks and it's very difficult to bend it again.
- Fatigue not feeling tired but not sleepy just up and in my chair and unable to function so all I am capable of is watch movies all day long. This can sometimes go on for days.
- Trouble in crowds - due to the height of my chair and stupid people on phones either texting and walking, with ear pieces in ears and music blaring or just talking on them. This just makes people totally unaware of their surroundings.
- Depression. I suffer from depression which I have managed. most of the time, all my life. However it is also a part of the disease and as part of the huge change in ones life. I can really struggle with a terrible sense of loss at times, and in fact find 4.5 years on it seems to be harder to shake off as time goes by. I am only 49.5 years of age and so these are the things I really mourne for:-
* Obviously walking. I used to be a huge walker and loved to walk for example from Prahran to the city CBD & back when I was living there. Or long weekend power walks checking out neighbourhoods etc.
* I miss simple luxuries such as going to the toilet when I need to. Or sitting and standing on & off a chair and not sitting for hours.
* I miss social contact hence love it when I go out. It's so wonderful to speak to people and they are so kind and interesting. I can't work due to the disease and drugs doing all kinds of things to me, and as yet I haven't found a project I can get involved in that suits me and them and holds my interest. I'm not worried as that will come.
* I really miss driving a manual car as I got my licence at 16yrs in Queensland hence drove for 29 years, AND LOVED IT! I always wanted to be a Formula 1 driver from an early age and probably at times drove like one! I miss the luxury of just hopping in the car and taking off somewhere on the weekend, or getting to a destination in any kind of weather. Now I have to plan according to the weather, destination distance and accessibility of using smart buses and trains as I can't catch trams as yet. I do have a half price taxi card however that can eat into my very small budget as well. However I do love driving my chair everywhere (I get about 10 kms mileage out of it) and using the train system. I've become a pro with all of that, and it's fun. To get a car converted for me to drive it would be about $110,000. A LOT OF MONEY! When you weigh up that cost versus the ones mentioned above, then I'll stick with how I do it and not grumble.
* I really miss travelling, terribly. As I've really started to embrace my love and passion for photography there are so many places I'd love to go to in the world, and just can't. It would be impossible to be on the Italian Riviera in a wheelchair, let alone on my budget. So my travelling is done in and around Melbourne for now. I do get very jealous when I see friends holiday photos on social media and hear all about their adventures.
* I miss so much more and will add to this as time goes on. :)
SO MUCH MORE TO COME......JUST EXHAUSTED AND HANDS NUMB......ANOTHER 2 SIDE EFFECTS OF NMO :)
- The palms of my hands feel like sand paper (to me) and tingle all the time but my skin is very smooth. I have very little feeling in them anymore and rely on my eyesight and the back of my hands to do things and feel fabrics etc. I can feel varying degrees of heat and cold. I can't do things anymore like do up my bra. A big thing for a woman!
- I have varying degrees of depth of feeling throughout my body. My upper body isn't bad but from my waist downwards it gets worse. I can't feel much of my buttocks and legs and so consequently have many bruises on me as I drive into things with my wheelchair accidently and don't feel as much pain. I drove over my feet with my new wheelchair 10 days ago and when we weighed it a few days later, it weighs 153 kg!!! No broken bones just some bruising. Thanks for Arnica oil.
- My arms and hands regularly go to sleep when I'm lying in bed. That's very annoying! The more I do upper body weights and chair boxing, the more numb my arms and hands are for hours on end during the night. This also happens when I'm taking photos.
- I am legally blind in my left eye from all the Optic Neuritis attacks over the years. The Optic nerve is so damaged that I can't see definition out of that eye eg. peoples faces, but I can see colour and roughly describe a room or surroundings. I'm used to it now but initially it nearly drove me crazy. It felt like I had that gooey "sleep" in my eye all the time. This makes reading more difficult as that lens is plain glass. I have a blind spot in the left side of my vision so need to be careful when crossing roads or if someone is o my left side.
- Incontinence in my bowel and bladder department. That means I have a catheter called a SPC or Supra Pubic Catheter meaning above the pelvis. This is basically a hole just below my belly button where this tube goes straight into it and into my bladder. Then what's called a "flip flow" attached to it, and then a "day bag". The catheter is changed every 6 weeks by a nurse who comes to my home. And the day bag and flip flow I change once a week myself. It's an amazing system and work brilliantly for me. The problem with this type of system and when once becomes incontinent is that as the bladder drains all the time, and is really made up of a muscle, if it's not being used and filled up regularly, it shrinks to the size of a walnut. Mine started to do that after 3 years and it was almost impossible to insert the tube every 6 weeks as the end of the catheter would hit the wall of the bladder and be very painful and uncomfortable. It was a concern. So the flip flow is a valve so you can turn the flow on and shut it off. That enables the bladder to fill up and the muscle to work. Then when it feels full I open it up or just do that every 1/2 hour. It's made a huge difference. Sadly though it took 3 years for someone to tell me about it and explain it properly.
- Muscles spasms in my legs and buttocks. These will start for no reason at all and can go on for up to 6 or more hours. No amount of Valium or Baclofen (drugs I take for spasms) will ease it. The Valium will knock me out which just helps to get some sleep. This will happen for no reason, and often at night when I am sleeping.
- Shocking stiffness in my legs especially my left leg. This means that it's near impossible to bend my knee and my leg or legs will lock. That means when they go out straight (and that happens involuntarily because they'll just shoot out themselves which is very painful), all the muscle power will not bend them. Constant exercise is the only thing that will keep my legs a little more flexible, but that means I have no life as my exercise regime to keep that going takes about 1.5 hours every day to do so, as well as all the normal things I do in my day like tidy my unit, make my bed, cook my meals, wash catheter bags, call companies and manage my needs etc.
- I do upper body free held weights almost every morning after breakfast every day, sometimes every second day if my muscles are sore, just a 20 minute routine of 12 reps per exercise, 2 sets each and 8 different exercises. One is to prevent "tennis elbow" due to transferring and having to treat my arms like gold as I need them so much. However my right muscles around the scapula or top back shoulder area get so tight and painful for days (because of the exercise but also due to the weird signals that the muscle sends re pain to the brain and backwards (the circle goes on and around all the time), that I am in pain for days and have to take additional Valium at night as my back muscles spasm all night and I don't sleep well. A small things in the grand scale of problems that people have, but in my reality, world and at that moment huge as I don't rest well and have to fight off that grumpiness, "why me" question and attitude and the depression demons that creep in so easily. These kinds of things can be the catalyst to then honing in on all the nerve pain, muscle stiffness and spasms, bowel issues and catheter problems that mount up to battling that depression darkness for days on end.
- Very stiff legs and leg spasms with the stifness in my left leg getting worse. That's due to the confused messages from the spinal cord not lack of exercise. - I have a machine called a Motomed which enables me to drive up to it and sit in the chair, strap my legs onto the pedals and as it's electric I can then move my legs. I HAVE too do this EVERY DAY FOR 60 MINUTES or else my legs are very stiff.
- My nerves in my coccyx area (my tail bone as we say) become very sore to the point where it feels as though I've split the skin and I can't lie down or sit as it's so painful. This will gp on for days and appear for no reason at all.
- Certain muscles shorten from sitting for prolonged periods such as the hip flexors, or the ones at your groin at the front from your hip to the top of the thigh. I have devised certain stretches and exercises to do if not daily then every second day to stretch them. Otherwise when I lie flat on the bed my legs shoot out rapidly in front of me and it's very painful. My left leg (the weaker of the 2) then locks and it's very difficult to bend it again.
- Fatigue not feeling tired but not sleepy just up and in my chair and unable to function so all I am capable of is watch movies all day long. This can sometimes go on for days.
- Trouble in crowds - due to the height of my chair and stupid people on phones either texting and walking, with ear pieces in ears and music blaring or just talking on them. This just makes people totally unaware of their surroundings.
- Depression. I suffer from depression which I have managed. most of the time, all my life. However it is also a part of the disease and as part of the huge change in ones life. I can really struggle with a terrible sense of loss at times, and in fact find 4.5 years on it seems to be harder to shake off as time goes by. I am only 49.5 years of age and so these are the things I really mourne for:-
* Obviously walking. I used to be a huge walker and loved to walk for example from Prahran to the city CBD & back when I was living there. Or long weekend power walks checking out neighbourhoods etc.
* I miss simple luxuries such as going to the toilet when I need to. Or sitting and standing on & off a chair and not sitting for hours.
* I miss social contact hence love it when I go out. It's so wonderful to speak to people and they are so kind and interesting. I can't work due to the disease and drugs doing all kinds of things to me, and as yet I haven't found a project I can get involved in that suits me and them and holds my interest. I'm not worried as that will come.
* I really miss driving a manual car as I got my licence at 16yrs in Queensland hence drove for 29 years, AND LOVED IT! I always wanted to be a Formula 1 driver from an early age and probably at times drove like one! I miss the luxury of just hopping in the car and taking off somewhere on the weekend, or getting to a destination in any kind of weather. Now I have to plan according to the weather, destination distance and accessibility of using smart buses and trains as I can't catch trams as yet. I do have a half price taxi card however that can eat into my very small budget as well. However I do love driving my chair everywhere (I get about 10 kms mileage out of it) and using the train system. I've become a pro with all of that, and it's fun. To get a car converted for me to drive it would be about $110,000. A LOT OF MONEY! When you weigh up that cost versus the ones mentioned above, then I'll stick with how I do it and not grumble.
* I really miss travelling, terribly. As I've really started to embrace my love and passion for photography there are so many places I'd love to go to in the world, and just can't. It would be impossible to be on the Italian Riviera in a wheelchair, let alone on my budget. So my travelling is done in and around Melbourne for now. I do get very jealous when I see friends holiday photos on social media and hear all about their adventures.
* I miss so much more and will add to this as time goes on. :)
SO MUCH MORE TO COME......JUST EXHAUSTED AND HANDS NUMB......ANOTHER 2 SIDE EFFECTS OF NMO :)