I couldn’t believe it yesterday, I actually had a good day when I needed it. Today is the day that for the first time in nearly two years that I am leaving the house, nothing exciting, just my appointment at the Dental Hospital regarding the “things”. For me one of the major things about going to hospital is having everything here on line sorted out and running as smoothly as possible without me here, so yesterday was a day of doubles, a day when I not only sorted everything I normally did, I did today’s as well, well almost, the only things I need to do before I go, is this post and set up the photo’s to go out on twitter, everything else is done. I was shocked to find that actually doing double didn’t take me as long as I thought it would and this morning I feel so organised that I am at peace with the rest of the day, something that in the past I never really was. It is so much so that I am at the minute playing with the idea that I might just start doing the same on my good days, as it would allow me to have the majority of the next day just to play games and do nothing, something else that I think might just benefit me from time to time. I am though a little confused as to how I managed it and if I didn’t have a tick list to prove it, I would be double checking everything ten times over, convinced that something had to be wrong. So here I am showered and organised, all I have to do is put on some make up so I don’t look to horrific, tidy my hair and put on my shoes and I am ready to start waiting for the ambulance and the worst part of the day, getting down those stairs on the stair-climber, maybe it is a good thing that once again I couldn’t finish my breakfast. My appointment is at 2:30, but as always you have to be ready ages before as they can’t tell you when you will be picked up, just any time after 12 o’clock.
You would think that I would be looking forward to getting out of here, but just as before with the appointments I had a 18 months ago, I am no more glad about going anywhere than I was then. Right now I am pleased with myself and running ideas of doing double days, but if I slow myself down just a little and apply thought, the truth is that the next two or three days will find me drained and in rather a mess. Adrenaline is an amazing substance but not one that you can live on for more than a few hours. For now though, I am enjoying it, this is a feeling I haven’t had for a long time, that of feeling in control, even if it is a false control, it’s how I used to feel all the time years ago. In the last two years of writing I have come up with theory after theory as to why I was the person I was and what formed the person I am now, but the one fact is that word organised is the one word that ruled my life from childhood onwards, until my PRMS throw a spanner in the works. Chronic illness and being organised don’t work together in any way or any form. You can plan, set up routines and have everything lain out ahead of you for every day and not one of those days will ever be completed by the planned time, something, be it pain, spasms or exhaustion, will get in your way, which is why I am surprised by yesterday, it was almost to plan, just an hour out. What ever the theory, there is one fact that has become very clear to me and that is it is our personality type that has everything to do with not just how we manage our illness, but even to the point of how badly we are effected by it, right down to which symptom we find the hardest to live with.
For someone like me, in the early stages it wasn’t the pain that I kept going to the doctors about, it was the exhaustion, being tired all the time through my organised world into chaos, both back at the beginning and right through to my last appointment with my specialist, I wanted something to keep me awake. They did try, I was was put on Modafinil and eventually a really hight dose of it, I should if you read the ingredients have been somewhere up on the ceiling needing scraping back down as it is a form of what drug dealer here call “speed”, I would take my three tablet and half an hour later be asleep. It was me, not the doctors who took me off it, as I couldn’t see what it was doing, I did one of my weekend tests and felt no difference at all, so I ended it. If you are an organised person and you are unable to do what you always did in a set time scale, well sleep is the last thing you have time for and when the hours creep upwards and those you are awake for are spent wanting to sleep, it is the worst symptom, followed by dexterity and memory. Different people with identical symptoms would list those symptoms in different orders, I think this is part of the reason they say that MS effects different people in different ways. If you look at the lists of things that can be effected they are all the type of symptoms that clearly would impact on different lifestyles and people to different extents. Dexterity and my eyesight were essential as I loved doing fine needle point, bead work and embroidery, try picking up a seed pearl bead on the end of a fine needle when you can’t see the hole and your hand is shaking, it’s not something many people do these days, fine motor skills may not be noticed for a long time by many.
I have always had quite a high pain tolerance and I was never the type of person to let pain stop me doing anything, if I had I would haven’t have done almost anything in the last 20 years, plus once I had had several doctors telling me that I was fine, well I did stupidly accept it and I just got on with the pain. Don’t get me wrong I was more than grateful when they eventually started to bring it down for me, but this is the person who went to work where I had to stand for 4 hours, the day after spending the night in hospital with concussion and a broken ankle. I don’t think that it is so much the symptoms effects different people in different ways, it’s more we deal with and are effected by them, differently because of who we are, individuals. Someone who is less frenetic than I was, probably wouldn’t have felt their daily life being impacted as soon as I did, or even as dramatically. It is one of those things that doctors can’t take into account when they are trying to give us an diagnosis, or even prescribe the right drugs for us, as they don’t know us at all, which is probably the only part of homoeopathy, that I totally agree with.
So I am yet again about to go and sit in front of another doctor, who doesn’t know me, nor do they know anything about my medical history, to look at something that isn’t even there any longer, I so love our NHS.
Please read my blog from 2 years ago today – 06/11/12 – To tell, or not to tell
I haven’t shed a single tear and I have been up now for 4hrs, so I think I am on the right track again, I knew I would get there but well it’s hard to heal yourself when you know there is no true recovery. I am only guessing but I am sure there are thousands of people out there who have or will go through exactly…..
Good luck. Hope it isn’t a wasted journey. I am glad you have sorted everything out in advance as I am sure you will be feeling a bit tired when you get back home. Xxx
I can’t remember what led me to your blog, even though it was only yesterday. I share several problems ( not quite the right word) I was moved to tears, not unusual. You state the exact same way I have dealing with Dr’s and specialists who do not know you. I also see a family Dr I have had for 12 years and he has been great as far as finding Dr.s who can help, but is out of his depth, very supportive but not much help. Like you I have always worked, have a family. Feeling out of control is huge, fatigue, pain etc. The worst thing you fight can change so fast, one day pain, dizziness, migraines and for me blackouts. I can feel good and then feel like I have been hit by a truck. I am tired of Dr’s it is physically and mentally draining and feels so pointless when they can offer nothing new. One med I took for almost 2 months was making me suicidal, and they almost put me in a hospital. Have only been off the meds for 2 weeks doing much better mentally but I feel like I have taken steps back instead of forward and makes me resist seeing more Dr’s. I really like your view of things and plan on talking more. Sorry I can be long winded and not as articulate as I have always been. I love art of all kinds, movies, music, animals. I have always wanted to see Scotland. I live in the States, deep south in a small town of Millbrook, Al. I am sending good wishes your way, and thanks for sharing. I feel less isolated and scared when I find someone who is going through the same things. 💙