Today, Scot writes his second Guest Blog – check out his previous one here – My Life Is Far From Over.
Well anyone who has MS has been there. So where is there? The ‘there’ I’m talking about is that place you reach when you think you’ve been through everything MS can do to you and you’re sure you’ve got it this time. You’re absolutely convinced that you can take on this monster and at least hold your own.
Yes, you’re pretty sure it’s dished out all it has and you’ve survived all of it’s challenges many times over, because as we all know, MS is a ‘Repeat Offender’ – it keeps coming back time and time again with the same symptoms. For me, along with many of my fellow MSers some of those symptoms have included foot drop, tremors, numbness in most limb ,legs that become so weak that I need to use a wheelchair (at times, a walking stick always), optic neuropathy ( this one is fairly new for me). I also lose control of my tongue, speech becomes nearly impossible as does swallowing and other various little nuisances that come and go.
But over the past 17 years, going through all of these exacerbations, there has always been one small bit of relief – knowing that it would pass. In time the symptoms would subside , or go away completely and I would have a reprieve for an undetermined amount of time and I would go into remission. My original diagnosis in 1997 was relapsing/remitting MS , and as I said in my previous blog, when I got that diagnosis I felt like I had been given a death sentence. Over these past 17 years MS has given me many mountains to climb and I think I’ve climbed them very well. There have been falls along the way of course but I have always been able to get back up.
Then in November 2012 MS did it to me again – it gave me another mountain. I was given a new diagnosis. My relapsing /remitting MS was now secondary progressive MS. And for the last 2 months I find myself waking up angry every day!!! I know that there is going to be variety of emotions that I’m going to go through, but this time unlike the first time I feel physically and spiritually assaulted.
I know that in time, with support from loving family and great friends, I will learn to be able to work through all of these feelings, but right now I wake up most days feeling like I just want to give up, and I’m longing for the day when I can just sit back and accept it . And at this point I wish I could cry and just mourn whatever else it is that MS is going to take away from me now …
Thank you all so much for giving me the opportunity to do this blog. It’s helped me more than I ever realised it would. You’ve all been such a huge part of what makes the good days really good and what makes the bad days so much easier handle……
such a pity this incredibly raw and truthful post hasn’t had any comments!
is it because Scott is going through the thing that RRMSers (like myself) are really scared of – the idea that our relatively cosy diagnosis ain’t necessarily going to stay that way?
thanks for the honesty and perspective, scott.
Hi Steve,
I was thinking the same thing – Scot wrote a moving, personal post and I was hoping he would get some lovely comments in support! I think you are absolutely right – us RRMSers shy away from confronting our possible future and would rather not think about it.
I know for me, in the back of my mind all the time is the fact that my dad’s MS was far, far worse than mine. I just pray and hope that the Alemtuzumab will give me a good few more years in relatively ok health.
I am so glad you posted your comment – a very interesting point to debate? Are we in two separate camps? RRMS versus SPMS? How do we ‘feel’ about each other?
Or is this a can of worms?
Scot – PLEASE comment – let us know what you think.
X
Hi , I wanted to say thank you for the nice comments , & I understand that it is a really difficult thing to have to face , the fact that RRMS may not be our last major dx w/ MS , & that MS may still have more to throw at us !!! But I want to say thanks for the oppertunity to write this blog it really did help me alot w/ the process of accepting my new dx .. And I rwally hope that it don’t make people not want to come to this wonderful site , it’s a great place to come & see that you truely are not alone in ur daily struggles w/ MS !!! <3
Hi Scot!
Thank you so much for writing and your lovely comments – got a big head now, lol. So glad writing the blog post helped – you write very well!
I was told by somebody when I was first diagnosed that within 15 years, I had an 80% chance of going into SPMS. Not something you really want to hear in your 30′s. But life happens to everyone, lots of things can happen in that time-span.
I think for a lot of people the loss of mobility is the biggest fear, along with losing independence.
X
I’m catching up on my blog reading today (bit of a rough time last week). Thanks, Scot, for sharing with us. I am so sorry you are struggling; by writing about it, I hope you are getting closer to the acceptance you want. We are rooting for you!
Sending positive thoughts your way…
Ms. C-P
Hi Scott,
Thank you for your time spent writing your lovely blog. I do hope you do not give up but I understand that feeling. I think there are three camps really if I’m honest. Those who are SPMS and PPMS sometimes feel that they have to hold back on how they are truly feeling. You have given an honest heart felt account of the process we have to o through to acceptance. I was diagnosed in my 30′s and have never had remissions (ppms). We are all different and in different places but hopefully by reading all the different daily blogs and tweets from all over the world will brighten up even our dark days. Thank you for sharing x
Hi Anita,
What a lovely comment, thank you so much for posting. It’s a shame you sometimes feel you have to hold back how you’re feeling. It’s a strange one. When I meet people with SPMS or PPMS, I feel I’m kind of holding back too, especially if I’m feeling healthy and on top of things. It can be quite awkward. For both of us! But hopefully, once we overcome that barrier, it’s just two people chatting away.
X
Hi Anita , I just wanted to say thank you so much for the very nice comment , and thank you for mentioning how difficult it can be feeling like we’re on the different camp… I hate that feeling that we’re not all together , but I also know how difficult it is for somebody with RRMS to have to face that it may not be the only diagnosis you get in a can actually get worse sometimes. my only hope is that other people will read all of this in the comment and hopefully comment back, because facing the fact that this can actually get worse is probably the best thing you can do I know I use to run away from that thought then when it happened it hit me really hard and maybe if I would have thought about it more during these years of our RRMS, just maybe it would have been easier for me but thank God I have places like this blog to go to and I still feel like I am part of the great community! a community full of great friends !!! <3
Hey Scot,
If you could look back and give advice to us RRMSers, what would you say?
Sometimes, when I look back myself to the whole process I’ve been through, I want to sit Limbolanders down and have a good old chat with them, so perhaps it’s the same when we (possibly) progress to the next stage?
X
p.s. thank you as always for the lovely comment about my blog! So nice to hear and means a lot.
Hi Scot,
Thank you for expressing so eloquently both in your blog and comments, what I’m sure many of us are so unwilling to discuss/confront….the fear of progression.
MS is such a sneaky thing and it doesn’t seem to read the textbooks/pick up on good vibes and so realistically, many of us will go through many of the same feelings of sadness, anger and frustration that you are currently experiencing.
Although this may not make you feel any better, it’s an enormous help (to me) to be able read about how you manage. So when the time comes, I can say OK, this is shit BUT I’m not a pioneer. Scot/Nicole/rollcall also went through this and thank goodness I read their blogs. In a way, we’re semi-preparing ourselves by learning from you.
So thanks once again for your frankness and honesty.
All the best,
Honeysucklex
Hi Honeysuckle,
Excellent point. And all the more reason for all of us MSers to ‘look out’ for each other. The same as we help Limbolanders up the ladder, so to speak. People who progress can hopefully look back and use their knowledge and experience to help us as we continue along the MS journey.
X
That’s a tough question for me , I’m still really new to being SPMS, but I think 1 thing I would like to say to Msers w/RRMS would be Don’t become complacent !!! Try to always remember that you do have good days , always make the most of those days when MS seems to be taking a break, try to never take them for granted , and try to keep in mind that those good days can still be taken away from you … And of course that Don’t happen to everyone , but you never know.I would also like to to try hard not to shy away from those who have SPMS or PPMS you just never know if you may one day be wearing there shoes !!! <3
Thank you so much Scot!
I think we are all in danger of becoming too complacent – we really do have to appreciate every single day, every little achievement.
This is a really interesting comments thread and something I hadn’t really given a huge amount of thought to. Maybe make a good blog post?
X
Scot, thank you so much for your honesty. I am struggling with the RRMS diagnosis and am trying to stay in denial about any progression. But it is real and you have made it more real in a good way. Your positive attitude and acceptance of all ‘flavours’ of MS is inspiring. God bless.
Hi there,
Your comment was really lovely. Sadly, Scot passed away yesterday. He was a funny, smart, inspiring man who kept my spirits up. We’ll all miss him and his wise words.
X
Hi everyone I just wanted to say thanks again to all of you!! Gettong all of ur comments has really brought home the feeling of being part of a group of people who are caring , and supportive even though MS can be so differant for each of us , I think the bottom line is that were all MSers and we all have the same core feelings about our lives w/ this monster … Anyways again THANK YOU ALL , AND I LOVE YOU FOR JUST BEING THERE !!! <3