Its been a long time since my last post. I’ve been well. No symptoms at all! I’m due another MRI sometime soon and hope it reflects how well I’ve felt. I always get nervous before them and start thinking about a plan B and what that might like like. From what I’ve read the funding for a 3rd round of Lemtrada seems a bit sketchy and that worries me. I think the worse symptom of MS is fear. Fear of the unknown, fear of what it can do, fear of what it can take away. I don’t think it ever goes away that fear. It becomes more manageable and less consuming but its still there, lurking in the shadows somewhere.
Mindfulness has helped me learn to self-sooth. I love listening to Tara Brach talk and often listen to her at bedtime hoping some of that wisdom will sink in. Some of it has I think as I feel much better equipped to deal with whatever MS brings.
In a weird way I lost a lot of my fears when I was diagnosed with MS. I don’t know if it was because MS left no room for them, or if dealing with such a huge loss blasted them into oblivion. Whatever the cause I lost my fear of heights, fears of failure, fears of looking stupid. I no longer cared and with that came a new sense of freedom in some round about way. I sometime ponder if having MS has changed me. I think it has in some ways. At my core I’m the same person, I have the same values as before and enjoy the same things. I do think its changed how I interact with the world though. I’m much bolder, tolerate less crap and have firmer boundaries. It does’t seem to have done my career any harm, in fact I think I’m more confident and more self assured. Crazy really given for a while I felt totally broken and needed all my strength to just cope.
The big 3. I might have the opportunity to move to the channel islands. The island is beautiful and I’d never be far from the sea. The pay is very good and its rated as one of the best places to live for quality of life.
I’ve got an interview in a couple of weeks and plan to do a whirlwind tour of the island while there. My concerns are the three H’s. Housing, prices to rent or buy are much higher than where I am now. Add hounds to that and trying to find rented accommodation which will accept them looks tricky. On top of that I have the small issue of MS, monthly post lemtrada blood tests and all the agro that would come with changing my driving licence, MS Team etc. Eek, when is it ever the right time to tell a prospective employer, or for that matter a present one and say; hey btw I have MS. Yeah its shit and I could relapse overnight, but don’t worry I’m no flake and will drag myself to work anyway 🙂
Anyway watch this space.
MS wise nothing to report. I’ve been able to avoid my monthly trips to hospital and get my bloods done elsewhere. I’ve been symptom free since my last post and had no issues at all. Something I’m super grateful for.
4 years on I still struggle with being patient. I had an MRI at the end of Jan and find myself checking my emails every hour. I do this knowing they are likely to take another couple of weeks. I do this knowing the results will unlikely be of much clinical significance to my care team. I do this knowing MS is a progressive disease and therefore progression on a scan is normal. Normal for everyone else but still not for me.
I’m at a point where I’m at a pretty good place. I accept I have MS and day to day go about my business just fine. I know this state of mind is fragile though and any hint of progression will see me sniffling into my pillow for a day or so before I continue on as before. Chronic disease brings many challenges and one of them being it becomes old news. To quote my father “that was 4 years ago” his reply when I shared something MS related. In his mind MS was a single event, I was poorly, I recovered and I’ve had treatment. He doesn’t seem to grasp or want to grasp its incurable and something I live with every day. My family are emotionally inept in these matters but then perhaps I’d be the same if it wasn’t me. I think its why I come to this blog, it gives me an outlet to dump my emotional baggage without enlisting a response from others.
Being the Anxious Annie I am I’ve been considering my options should the MRI bring something new to to table and these are what I see them to be:
Do nothing – Lemtrada is designed to reduce relapses, not stop them altogether. Although I think I relapsed last year, if I did it was minor, I recovered and I’m feeling healthy and strong right now. Of course if my MRI lights up like a Christmas tree I will discard this option.
Consider a 3rd course of Lemtrada (if offered). Pros are I know what to expect and its straight forward. Cons are is it worth it if the other courses haven’t worked? What defines treatment failure? Statistically what is the likelihood of a 3rd course being more successful?
Consider another DMT (if offered). I’ve kind of discounted other licenced treatments as apart from Tysabri all the others are a lower efficiency. Tysabri being time limited with the risk of rebound coming off it puts me off. There also doesn’t seem more data of people moving from Lem to another DMT.
Consider HSCT. Highly unlikely to be offered on the NHS although I talked to my neuro a couple of years back about this and he agreed he would put me forward to be considered if I failed Lemtrada. The question is what defines treatment failure? A few years ago I would have jumped at the chance but now its something I’d need to consider really carefully. Out of all it carries the most risks and what I’d need to know is the success rates v Lemtrada. I also question if fear was the driving force behind my decision making back then with complacency affecting me more right now. Its easy to think MS is no biggie when you’ve been fine for years yet I remember the terror of that one big relapse and what it did to me.
I wish we knew more about individual prognosis as without this I feel I’m trying to make decision’s with limited info. What I am certain of is what I can cope with and what I cant. I know I wont cope with lasting severe disability and I know this with every fibre in my body
Gosh just realised its been ages since I last posted. Lots of things have happened since, good and not so good.
Job / life. My new job is going really well and my contract has been extended for 15 months which is fab. For the first time in years I feel I have the head space to actually have a life outside of work /MS. My poor horse has never been rode so much, I’ve booked us both onto spring camp and have started to have weekly lessons again. I’ve decorated the house and generally just been busy enjoying my free time and increased mental energy.
Health. Not so good. I might have increased mental energy but physically I’ve felt tired. UTI’s, thyroid issues, heart palpitations,and to top things off I’m pretty sure I’ve relapsed. Subtle in the grand scheme of things but there all the same. For a time I felt weak at the knees and no, there was no handsome stranger about. When I was seated and lifted my heals up and placed them back down I also felt a tremor. It felt like it was coming from my knees but it could have been my ankles. Both these things have resolved and I didn’t have an emotional relapse with it so I’m pleased about that. I decided a long time ago I will no longer involve, or rather try to engage my loved ones as they never seem interested and I just end up feeling hurt. I’m a lot stronger these days and have learnt to lean into the fear and contain it without the need for external support. Thankfully ringing around MS support lines while sniffling into my sleeve is a thing of the past. This is what people must call acceptance.
My MS nurse seemed a bit indifferent but I guess that’s the reality of dealing with an incurable disease. There’s nothing that can be done about it so why dwell. I do try and embrace this ethos but in reality this is hard. In contrast when I causally commented I’d been having a heart palpitations for the last year I was seen immediately by the registrar and sent for an ECG there and then. Apparently my heart was erratic and I’ve been referred to cardiology. Oddly I’m not at all worried about this, it might be erratic but beat it does, plus if it was anything serious I imagine I’d have dropped dead by now.
So a mixed bag but on the whole I’m doing well and looking forward to 2017.
Good news. I’ve accepted a new job. An allied trade to my current role and it should be a lot less stressful. The not so good news is its a temporary contract but the perk with this post is its home based. Less money but I’ll save on the commute, the days will be shorter and the dogs will have more company. Hopefully this is a win win and it will all work out.
MS wise noting to report. Zero symptoms. No blood abnormalities. Two fingers to MS.
After a lot of soul searching I’ve today decided to leave my job and potentially my career.
I don’t know where I go from here. My notice period is long so I do have time on my side. I’m fairly educated and don’t anticipate too many difficulties finding something else, I’m just not sure what that something else will look like.
Does MS play a part in all this? Yes and no. While it doesn’t affect my job on a practical level, I am as ever always mindful of it. My job takes a lot out of me and I’ve realised I almost self neglect my personal life. I’m often stressed, my house is a tip and I have no time or energy for anything outside of work during the week, furthermore I largely survive on a diet of cigarettes and chocolate. I cant imagine its a good for MS. Something got’s to give.
I might look into locum work. The pay is brilliant and while I’d still be stressed it would mean I could take extended breaks between assignments. This would make it more manageable. My other option is to do something totally different although what that would be I don’t know. Unqualified roles in my sector are low paid although I could make it work if I did enough hours. There is always the fear of relapsing at the back of my mind and these type of jobs have no security.
I am resourceful and will find something. MS has made me resilient too if nothing else. I’m trying to see this a positive step forward towards a better way of life. I feel sad and relieved at the same time. Sad that I am potentially walking away from a career I trained so hard and for and for so long, a career I had such hunger for pre MS. Post MS my priorities have changed and my ambitions are much smaller. These days I’ll be happy to still be walking in 5 years time let alone wondering where I’ll be career wise. Being healthy and living a life without the constant pressure of work related stress is my priority right now.