Fuzzydragons

So I've tried to speak about how to cope with knowing your partner has MS. I don't want to sound like whiner or undermine what Jen goes through, but I need to air this, and maybe save someone else from becoming as embittered, cynical and hardened as I am. To be honest there are a damned lot of times I struggle to cope, I won't lie, its taken a horrendous mental toll. Watching someone slowly lose their mobility isn't easy, especially when you see the statistics... 50% of RRMS sufferers go to SPMS within 10 years, and 90% within 25 years....not really great odds and persistently the elephant in the room...constant uncertainty is what wears you down, not knowing. At least with a roadmap you know what to expect, but with MS its always ready to throw you an unpleasant curve ball when you least expect it. Jen copes admirably...me on the other hand, I feel worn down, burnt out, bitter, angry at everything and nothing at the same time...an unfocused rage with no one targ...

Carefree Canadian Days So I've been thinking about writing this for a long, long time, just haven't found the words, still not sure I have tbh. The following is my and only my view of what its like to be the partner / carer of someone with M.S. I say partner / carer as the lines rapidly become blurred, and at times it can feel as though your more carer than husband /partner / wife / girlfriend / boyfriend / fiance / fiancee etc. Lets go back 10 years, we had just gotten back to the U.K. after almost a year in Canada (we came back for a myriad of reasons - too many to go into - had we not..the road taken, likely would have been a lot lot different) A few months in, I noticed Jen stumbling, tripping over her feet, falling over for no reason, then she started having pins and needles and loss of sensation in her hands and feet. Thankfully the GP recognised it as stocking and glove neuropathy, and referred Jen to neurology, at this point I was working as a Bookseller in Bo...

OK, its much easier to work large, I really have to pick and choose the most important lines on the horse. I can get much more detail when I work bigger, but having a challenge can be good. Makes me work my artistic brain :p I wanted to have this little thing finished today, but had an appointment at the hospital to go to for neurology. But, they had no idea why I was there. After a bit of back and forth, figured out it was about a possible medication change. So now I am going to be on Gilyena instead of Rebif, and do not Google the side effects lol, they are not horrible but can be, not nice :p. Shiny info packet. I can't imagine how much it cost to produce these, money that could have been spent on things that are more useful. There really wasn't any info in it, that I either couldn't look up or wasn't already told.

  More art made from my MRI. Kind of hard to get photos of this, looks better with a bright light behind it, but then that causes reflections on the plexi-glass.   I decided I wanted to paint one of the scans but paint different parts of my brain in different colours and on different sheets to try to give a better sense of the layers in a brain. This is def. a piece that look so much better in person lol and you do get a better sense of layers when viewed in front of you rather then in a photo.

  This is for the mixed media class in college, a sculpture thingy :p Shapes from making a mind map about MS cut up with stencilled on words from the mind map. The words either have to do with symptoms, types, signs or medication you can take.The wire allows the shapes to wobble like a person with MS can. See I can be all arty farty  when I need to :p   I have no idea what I am going to with all of the stuff I have made for this class, its either huge, or heavy so have nowhere to really put it.

(not my photo, will remove if asked) Had an appointment today with a neurologist, and 2 (training?) doctors, I'm always asked if its OK for the junior docs to be in the room. Um, no :p How are they supposed to learn if they don't see first hand what goes on? Never understood the people that say no, since the junior docs generally just observe and ask questions, and will probably have to treat you in the future. Anyway, I need to have another MRI since its been a few years since the last one. If there is no change, great, if there is then there are new drugs now that I can maybe take to try to lessen the damage. Either different injectable meds, or there are a few daily pills that are a possibility. Really hate MRIs. Claustrophobia doesn't really click in, (close my eyes and try not to think of anything), its just really loud in that metal tube :p Lots of loud banging that music no matter how loud doesn't drown out. I asked for a copy of my own MRI, so when I ...

  Thankfully I don't need to take any more of these right now, they taste horrible :/ A few days ago I started having problems with my right leg, pins and needles feeling, major drop foot and then it just got worse to the point I could not walk at all. That was fun :p So 3 days of steroids to try to help and an appointment with neurology on Tuesday. Probably if they don't think this round of steroids has done enough, they will either increase the dose or put me on IV steroids.  This course of steroids has done a bit, but its still very hard to walk around and steps are dangerous more then they usually are :p I don't sleep when I take steroids, I was given sleeping pills but they don't seem to be helping, the lack of sleep would be great if I could actually walk around. Would get lots of house work done :p

Might have gotten to the bottom of the problems I have been having with my lung. The reason I have stumped the docs if because no one thought that there might be more then one problem. The pain didn't make any sense on top of the breathing problems. So more then likely have asthma, which explains why being around someone who smells like they bathed in crappy perfume causes me to not be able to breath properly. Really people? There is no reason to smell like you were in the middle of a perfume factory explosion. The pain could be something called a MS hug . Its so painful :( And I hate that 1-10 pain scale. Its pointless because what I consider a 5, might be a 10 for someone else. Def. a 10 today tho, wanted to curl into a ball or get someone to knock me out.  So back to the docs, who agrees its probably 2 things causing the problem. Need to talk to my MS nurse and take more pain killers, since the only thing to do is manage the pain :/ yay... Messing around with my Inktense...

I like the idea having a list of things you want to do before you die, but lately I have been seeing posts and comments on other sites that a lot of people that have MS think that because they have MS they will die young. Yes, in some cases, a person with MS will have a shorter life expectancy then someone without MS. But you want to know how much shorter?? Maybe 10 years . Thats it. Its almost like people say screw it, whats the point? Just let me die already :/ The point is, that even with a crappy diagnoses, and a disease that is unpredictable in how it will effect you, modern medicine has come an amazingly long way in the last 10-15 years. Personally I don't think there will be a cure for probably another 10-15 years, but thats no reason to just give up. There are so many things you can take to lessen symptoms, or slow down the progression of the disease. Yes there are different types of MS which can and are horrible to deal with, and maybe its just me, but I think th...

summer view , a photo by fuzzydragons on Flickr. Ok, I am not a summer person. Never have been, never will be :p And heat really effects my MS, to the point I can't move and have zero energy. So while everyone else is out enjoying the odd weather, I am in front of a fan, drinking a lot of cold fluids :p (and eating ice cream, healthy eating be damned :p) 31c is not normal for here(normally you can see the hills from the kitchen door clearly, but its so hot, the air is hazy :/)

  Need to start taking these in an effort to try to help with the nerve pain in my face. Lots of fun feeling like your face is on fire :p My MS nurse says that it is Trigeminal neuralgia . I can't even pronounce that :p Another invisible symptom to add to the list. Most of my symptoms, the average person can not see, which does of course cause the usual looks and whispers behind my back that I am perfectly fine. I am very vocal about the fact that not all disabilities are visual, there are so many that you cannot see but they still effect a person. I just wish more people realized this and didn't immediately jump to conclusion that a person is making everything up.

I hate this thing :p Its very common for people that have to give themselves injections to get sick and annoyed at giving themselves needles, (I know it has a name, but I can't think of it right now, brain fart :p). I don't think I would be that annoyed at having to take injections if I didn't also have a bleeding disorder , because on top of the bruising I usually get hematomas a lot. So my stomach and butt look like I have been hit with a BB gun, it can be pretty painful. I had to stop injecting on my thighs as it was too painful and the injections sites were swelling right up and bleeding a lot :/ So the 4th was my MS diagnoses anniversary. 6 years ago,time flies. Have things changed? yeah, I can't walk a long distance, but being able to walk even a bit is better than having to use a chair. I do have a hard time remembering things, so cognitive issues are a problem. I am blind as a bat without my glasses on :p My hands and feet go numb more, and the meds to...

  So I haven't really been doing much drawing the last few days as my hands have been going numb on and off everyday since Wednesday. Little frustrating when I want to draw and I have a few things left to finish up for college. Now saying numb is not exactly right. I have feeling in my hands, but can't control where they go. So when my hands get like this, using a pencil is out since I can't have any type of detail and can't really control where a pencil/brush/etc lands. And because it can be pretty painful, burning,(but my hands will be freezing) plus a pins and needles feeling,(like having a foot that has fallen asleep but times the feeling by 10), I can't do things I normally could. And the feeling can last for hours, or last for minutes. It took me 3 times as long to draw that fox line art then it normally would because I had to stop as I couldn't hold the pencil at all. Typing is fun :p My fingers miss keys all the time, and my hand just gets too tir...

So I did decide to do the Eagle in coloured pencil (or colored pencil, depending on where you are :p). I am going to try and not use any greys on this bird, stick to blues and purples to make up the greys that are needed. Of course I might just end up breaking down, getting sick of all the layering and pull out my greys :p For more creative space, head over here :) On the health front, went to the neurologist yesterday. Said I probably am not having a relapse, its just the side effects of the meds coming out of my system, so back on the meds I go and hope they don't make me really drowsy. She did give me some medication that might stop my leg from jerking at random times keeping me up at night. This shouldn't make me drowsy, but if it doesn't work I have to try another one that more than likely will make me drowsy. I really don't want to take anything that will make me any more tired than I am since I will be going back to college in the fall, don't want to fa...

Since so far the feeling in my right hand is about 90% normal, I can still draw :) Needed a break from the graphite horse so out comes the neocolors. I love playing with them, the colours are so pretty lol. This is supposed to be a Bald Eagle done with coloured pencils. I could change my mind and end up doing the bird in graphite so that there is more of a contrast between the bird and the background colours, but so far its going to be CP. And a health update: My left hand is about 90% numb, makes typing hard, keep missing keys. Its such an odd feeling. Like my hand is a dead weight, and I don't know where it is a lot since I can't feel it. My left leg has gone numb from the knee down. I can walk but it takes a bit of effort to move my leg since it to feels like a dead weight. Been stumbling a lot since I do tend to hit even small little things on the sidewalk and they throw me off balance. And telling people that the parts are numb isn't even an accurate description o...

87/365 02.10.09 Originally uploaded by fuzzydragons Perfect spot for the cow on drives. Just have to move him when the window is down so he doesn't get blown away (cheapo version of Twister?) So I decided to join BLOGTOBERFEST this year. Make a blog post everyday in October. There are so many people joined up, lots of blogs to look at and some of them are having giveways. I don't know if I will actually manage to post everyday. Might just end up posting a lot of photos :p Such as today where I really have nothing to post about. Kind of in limbo dealing with my MS, waiting until next week to see what my neurologist says. My MS nurse said he might suggest different drugs, or want another MRI done. Hopefully not the latter. Last time I almost passed out leaping off the MRI table. Got up too fast but I wanted out of the giant magnet. When Mr.F had an MRI done, he fell asleep :p Going to try a splint on my hand to see if that helps stabilize the hand. Worth a shot at ...

I did debate to myself whether or not to post this because I really do try not to talk about MS a lot but its been bugging me since it happened. Its really so small and immaterial but for some reason it bugged me. So a few days ago I had to use the disabled washroom down town which you need a RADAR key to use. Yeah no biggie, would have used the normal bathrooms but they were locked but that is why I have the key to begin with if the bathrooms are locked. So when I went to leave there were 2 women looking at the locked gates and then they saw me. Looked me up and down like I was something rotten on the bottom of their shoes and whispered to each other "well she doesn't look disabled" Now normally I would have either turned the air blue replying and gotten in trouble, or would have asked them if they would like my disability so they can be looked at the same way. But I was in too much pain from our walk and had to go meet Mr.F at the pharmacy. I was visibly limping and cle...

Yupo. Kinda rolls off the tongue. Fun to say. But have no idea what I think of the paper lol It is so odd. I wanted to just see how different media acted on it so took some Neocolors and Inktense pencils to the pieces that Kaslkaos sent me :) I decided to stick to something simple to experiment with and whats simpler then an apple? This is with the Neocolours laid down dry. It was like drawing with markers, or at a very long stretch oil pastels. I do like how easy the colour went down. Very streaky which I didn't like and the crayons picked up the graphite off of the Yupo paper and smeared the colours together so some of the light parts now had grey marks in them :/ hmm wetting the crayons did not work that well. I think with the paper being so slick and smooth that everything just pooled together :/ The swirls look really cool tho lol but I lost any kind of shadow to the apple that I had before I wetted the paper. This is done with the Derwent Inktense pencils. I actually really ...