This time last year, MS made itself known to me for the first time. We think it may have been there for a few years before but quiet and in the shadows. Whilst I wasn’t diagnosed properly last July, my hospital team did say there was a very likely chance that it was MS.
Physically not much has changed in that year. I’m still no wiser to the how/what/when or whys of how I got here. I still don’t really understand how the disease works or what makes it better, but then again does anybody?
I am on medication, I eat the right things, sleep when needed (which is a lot) but other than that things seem to be plodding along as if they were still as they were a year ago.
On the subject of sleep I have been sleeping a lot lately. This hot weather is like an energy sponge – taking all of mine the moment I step out of the door. By the time I am home from work at 6pm I’m practically crawling in to bed before I can even eat. But this glorious weather shall pass and then normality will start again!
As per my last post regarding my medication, I have decided to see out Avonex for another 6 months until my next MRI scan. Dr G does think that this treatment isn’t strong enough for me but didn’t deny that maybe I haven’t given it long enough to work it’s magic. If I have another relapse in the next 6 months he’ll bring me in and we can change it earlier but fingers crossed everything seems to be settling down and the worst is behind me.
(P.s is it coming home?)
After the longest of working weeks and the busiest of weekends, I have been riddled with aches and pains and pounding headaches. After a short trip to work I decided I had to come home to bed.
I swallowed the regret and embarrassment and came home, got in to bed and slept for 14 uninterrupted hours. Waking up late I’ve spent the rest of today drinking tea and watching trashy telly. It’s surprising how much better I feel already.
I still am yet to learn how to take life a bit slower or how to stop feeling so guilty for not being at work when I’m needed. But I’m getting there… slowly.
So it appears I may have ‘slipped through the net’… 6 weeks after having an MRI taken my neurologist finally contacts me to tell me it’s ‘quite bad news’.
My latest MRI showed multiple new areas of active lesions despite being on Avonex since January. He was surprised to see this and said it looked as though the Avonex wasn’t making an impact at all, and we are now to consider what treatment I can move on to next.
We have an appointment next week to discuss but honestly I have no idea what to do- I already absolutely hate doing my injection only once a week, how will I cope with doing it more? I’ve always been against the thought of taking tablets because I don’t do so well on any form (all antibiotics and steroids make my mouth taste like coins… gross).I don’t know if I’m considered ‘ill’ enough for the infusions so what other choice is left?
I felt as though post appendicitis I was doing okay and getting on top of things but I feel like this news has knocked it out of me again. I’m back to feeling a little bit sorry for myself and a whole lot of apprehensive for the decision we come to next week.
Hello! It’s been a little while since I have written on here but the last few weeks of my journey since my appendectomy have been very smooth sailing!
Other than the fatigue and occasional numb feet, everything has been great. I had my repeat MRI, but three weeks on still no one has been in touch with me, so I can only assume it’s good news and that my medication doesn’t need to change just yet.
I’m still having my monthly blood tests and everything is coming back clear so hopefully my body has settled down and this is a little glimpse of how life is going to be!
It has been my little sisters turn to be in the wars. She has had some trouble with a bad back for a while and they’ve come back and said she’s got an extreme curve in her back along with arthritis. She is only 15. My mum and her have spent the last few days moping about it and talking about all the worst case scenarios (wheelchair, lifelong medication…).
It’s had me thinking that whatever illness or ailment that is thrown at you could be taken in this way: when I was first diagnosed my first thought was wheelchair but now my reality of actually living with MS couldn’t be further from that image. I still have complete unlimited use of all of my limbs and I am almost 99% sure that it will continue to be that way for many many years. Everything has emotionally settled down to life pre-diagnosis which is great.
Hope everyone is going okay x
I’m finally feeling well enough to write this, almost 3 weeks post surgery. My nurse warned me that whilst I was recovering from my operation my MS may flare up and make me even more uncomfortable and boy was she right.
I won’t go into detail about the past few weeks because it was a really dark place for me. I spent day after day laid in bed physically unable to get up but mentally avoiding everyone. It was the first time ever that I truly felt completely alone and completely sorry for myself.
But finally the fog has lifted and I’m started to feel much more myself. After all feeling sorry for myself isn’t a medicine it won’t magically make me better, it makes me feel a whole lot worse.
And now it’s on to the next chapter! My neurologist is keen to get me on a different medication after my last big relapse (Optic Neuritis x2) so tomorrow I have an MRI scan to see whether any damage has actually happened. If it has I will see him next week to discuss new treatments, if it hasn’t I can breathe a big sigh of relief and carry on with Avonex.
Sending love, A x
Another day, another hospital bed. I thought I managed to squeeze all my bad medical luck into one year but unfortunately this year has started just as awful.
I’m currently day two into a hospital stay. I have been experiencing really really bad pains in my tummy for the past week or so but I was very naughty and used only my MS head for a long time. “Could this be the MS Hug I’ve heard so much about?”.
Because I have only just had a relapse and a course of steroids I knew that my Neurologist wouldn’t want to offer me anything else so I kept quiet for a few days, hoping the flare up would just get better on its own. On Monday night I woke up in absolute agony (I’m normally someone with quite a high pain fresh-hold and can sleep through ANYTHING) but still didn’t want to be a hypochondriac so off I went to work. My manager pleaded with me to tell someone at around 1pm as I could barely walk I was in so much pain.
So I saw my GP and she had a look at my tummy and said “A you have waited for too long- I need to send you to hospital ASAP. Do you have someone to take you or do you need an ambulance?”
A few tests later and it’s confirmed: Appendicitis. I am having it removed either later today or tomorrow morning. I was beyond upset with myself because if I had left it any longer it could have ruptured and been a very big problem. All because I’m too stubborn to talk to anyone for fear of being ridiculed or thought badly of.
My next lesson is to learn more about my body and my illness because clearly I have no idea at the moment. I don’t know what to worry about or just ride out. I don’t know whether my crappy immune system is caused by my MS or my MS is caused by my crappy immune system. I don’t know if I get poorly because of my MS or poorly because of my crappy immune system.
Basically my body is broken. Where can I buy a new one please?
Over the past 7 months when MS first wormed it’s way in to my life I have had to deal with not only physical issues such as slowing down a little, understanding what pains/ailments where my MS and what we’re just ordinary every day problems, I have also had to overcome a lot of personal issues too.
Some of the things I have learnt along the way have been difficult to accept but necessary in order to cope and not let the dark cloud of self-pity over shadow me.
- A problem shared is a problem halved. This is the most important one for me I think. I am someone who has always really hated any kind of attention. My sister, who is a few years younger, is the literal opposite of me. She loves being the centre of attention no matter the reason. I think her attitude to life is what makes me such a silent worrier. I can spend so much time in my head just constantly overthinking things and worrying about things – weeks and weeks can go by when I’m struggling with something but rather do anything about it I just revert into myself and get in a very ugly place. Whereas the minute something negative happens to L she tells someone right away and a suitable solution is always found. I’ve had to take a leaf out of her book these past few months and just talk to people more. My Nan has unfortunately been the brunt of all my worried thoughts but she’s excellent at telling me when to calm down and not over worry and when to encourage me to act upon it. We have a rule- if it’s bothering me for more than 3 days… tell someone.
- Rest is best – whatever the occasion. Even a cup of tea and a sit on a comfy seat for 20 minutes does me the world of good. So what if on shopping trips we need to make more coffee shop stops than clothes shops? My friends and family have taken everything in their stride and are so understanding. They are normally the first to notice when I need to take a breather.
- Always see the positive in every situation. Yes I’m in the throes of a relapse, yes steroids suck ass and not being able to see is beyond irritating. But I’m going away in 3 weeks to Barcelona and I’m beyond glad that this hopefully means I will avoid any ailments whilst I’m away so I can enjoy myself as much as possible and take in all the beautiful surroundings without having to wear a eye patch!
- You are doing okay. You are in fact doing more than okay. I am beyond proud of myself for keeping my head above water and not letting my new illness define who I am and what I can and can’t do.