Jenny I am very aware that I have been extremely quiet of late – a combination of holiday + kids off school + busy weekends + returning to work has left a very exhausted Jen! Today is the first day I have been able to have some ‘me time’ in a long while (the kids are at activity club, much to their annoyance!).
I returned to work last week, initially just doing 1 full day. This week and the next few weeks look like:
- Week 2 (this week): 12.5 hours (over 2 days)
- Week 3: 15 hours (over 2 days)
- Week 4: 22.5 hours (over 3 days)
- Weeks 5&6: 15 hours each week (each week working 2 days)
I usually work 22.5 hours over three days of work. Occupational Health recommended a phased return to work, only doing a maximum of 50% over the first couple of weeks; I then need to use my own annual leave to build up to 100% work. I figure that I am going to need those extra days off in weeks 5&6 and, as a bonus, we are going to Centre Parcs for a long weekend, sans kids, to just chill out, read books and rest. I can’t wait.
I’ll update a bit more about work when I have done a few more weeks, but let’s just say that that it has taken a lot out of me so far, I feel like I need to get my brain back into ‘switched on’ mode, and that is happening very slowly! Getting up at 6:30am is so, so difficult and just the need to be organised around making sure my bag is sorted and my packed lunch is prepared is draining. But I said that I would give it a shot and that’s what I will do.
I’ve been to Sheffield twice this week, initially to watch our little dolphin son compete in a swim meet on Saturday and to visit friends who very nicely let us crash at their house for the night. I also went yesterday to see a new Neurologist (I normally go elsewhere) after I asked for a second opinion about my MS.
Many regular readers will know that I have had MS for a looooooong time – first relapse when I was 13, diagnosed aged 15 and I am now, ahem, shall we say late, late thirties. I have lived with MS for over 25 years. I was initially diagnosed with Relapsing-Remitting MS (RRMS), then Benign MS. Please see below for pictures of what these may ‘look’ like, in regards to relapses (periods of distinct attacks), taken from The MS Trust.
Although I had a few relapses in the 2-3 years after being diagnosed (as in RRMS), I then had long periods without anything at all, sometimes up to eight years, hence being ‘down-graded’ to Benign MS.
Call it laziness or sticking my head in the sand, but as soon as I heard I was benign, I almost forgot that I had MS. I didn’t feel like I had MS, so I didn’t, right? Well, I was wrong. Unknown to me the damage can still be happening in your brain even if you have no perceivable symptoms, as I first noticed six years ago when my legs started dragging, even without relapses. Add in crushing fatigue, word-finding problems, progressing from using no mobility aids to one crutch, then two, then a scooter… I knew that I had moved onto Secondary Progressive MS (SPMS). Trying to get my Neuro to admit to it, however, has been a struggle. I knew something had changed and I just wanted to be treated as someone who knows their body best… so I went to Sheffield for a second opinion and, lo-and-behold, the Neuro there completely agreed with me. For people who don’t know much about MS, SPMS is basically when your body stops have relapses (often has none at all – I haven’t had a relapse in 12 years) but disability creeps up on you. Like all MS stages, the full extent of how much a person may progress, is unknown.
So, I guess it isn’t anything surprising… but it is still a lot to take in. I am trying to stop myself from being Google happy and searching, ‘how bad can SPMS get?’ I suppose I just need to try and keep doing what I have been trying to do, making sure I rest and making the most of the time I spend with my loved ones. I certainly don’t feel as guilty about potentially not being able to continue with work for much longer… I have done bloody well to get this far and my priorities are absolutely my kids and husband, so that is where I would like to concentrate the energy that I do have.
Is anyone else in that limbo between RRMS and SPMS like I was? I’d like to say that it is a relief to finally be given a ‘label’ but it isn’t really. Wishing everyone all the best until next time.
I’m also between both. Without the medicine, I will have a relapse but even on the medicine I continue to worsen. I keep hoping for some stabilization from the meds but it doesn’t happen because there are NO meds for SPMS. My doctor won’t label me SPMS because that can actually give cause for insurance to deny medicine that I’m getting because the medicine is for RRMS. But yes they agree to I am both. I’m right behind you at 20 years diagnosed but I never had any years without issues.
So sorry, it has obviously been a difficult 20 years 😢 Do they ever offer drug trials in the US? The neuro that I saw mentioned trials for both statins and something called siponimod, but not sure if/when that would happen xx
They do offer trials. I heard of siponimod, I think that’s from the makers of Gilyenia. Things are still a ways down the road here.
I’m sorry to hear this Jen and hope you’re ok. Whatever you do, don’t go on google!! I made that mistake at the beginning, it was just awful. I don’t know if its any help at all but I always remind myself that yes, it could get really bad but for most it doesn’t and there’s no reason why we cant be in the ‘doesn’t get really bad percentage’ of people. And also that whatever type we have doesn’t really change that in a way. Like some people with RR will be doing much worse than some with progressive, its such an odd condition. I even know a few people who are doing better once their MS developed to progressive, which makes no sense, but again MS never seems too. :/ Just keep looking after yourself and remember you’re doing really really well with going back to work and everything. I’m struggling after only 3 years of MS. This has turned out longggg! Sending hugs and here if you ever need someone to talk too. xxx
Thanks so much Heather, I really appreciate that. I think the fact that EVERY type of MS is so unpredictable is what makes it so annoying! I am just going to keep going as I have done. It helps me mentally so why not? Xxx
Whatever helps you, just do that. 🙂 Thats the conclusion I’ve come too aswell. 🙂 xxx
I would definitely say this should take the edge off the guilt factor, though I know it’s easier said than done because even when we know we’re not well and such we can be our own worst enemies. I’m so sorry you’ve had that news and it’s obviously a lot to take on board, let alone to accept. I can’t offer many personal thoughts because I don’t have MS, but I know the limbo of pre-diagnosis and not having a ‘label’, and have actually found that getting something in writing, being told what it is, can actually take a little pressure off in some ways because from there you can see it as more of a turning point towards looking at how best to manage things, on putting the focus on taking care of yourself. I really hope you can keep hold of the idea of Centre Parcs as something to look forward to because you certainly deserve the break! Please go easy on yourself… Sending hugs. ♥
Caz x
Thanks so much Caz 😊 You’re right, now I know what I am dealing with, it makes it easier to put into practise all the things I can do to try and help (energy permitting!) 🤗 xx
Sending you happy thoughts and karma. We only know PPMS in this house but I suppose having some certainty is better than not knowing. You’ve battled it so far, you can carry on. I hope there’s some drugs you can take help ease symptoms. And step away from Dr Google! X
Thank you, have been quite good at restraining myself!!
Hi Jen,
I read your post with a tinge of sadness but also with great empathy, been there done that too…
It is not important to live/experience/pay credence to the type of MS you have at the moment. Just keep on living your life! It ain’t over for you yet Jen you do great! Enjoy your work too, it will make an ENORMOUS difference to you mentally and physically. I just started (6 weeks back) a new job that consists of 25 hours a week and I am LOVING it! It is having a huge effect on me mentally – much much more positivity – and physically too as I have to move about a lot more than when I was at home.
My Neuro is still battling to put an exact label on whichever ‘type’ of MS I actually have and sometimes he says he thinks it is SPMS, sometimes PPMS and sometimes Benign PPMS (whatever the hell that is…) the bottom line is that every day is a huge battle for me and I have gotten used to plotting each move prior to having to make it. I use a walker 24/7 and cannot just get up and move across a room as I will fall over.
My Neuro (who I saw last week) said to me ‘use it or lose it’ and that’s the truth. I have noticed that due to the very long winter that we have been experiencing here in NZ that I have been stuck inside a great deal and the effect has been very noticeable, so now as we move into spring (hopefully) I am going to start with some physio every week on my day off.
Anyway, do what you can and stuff the MS! I follow my diet (don’t take dmd’s) and try to maintain some semblance of ‘normality’ but overall I try very hard to enjoy each moment WITHOUT thinking about how much worse it COULD get…. Try it!
Cheers!
Tony
Thanks so much Tony! A label is just a label and doesn’t actually do anything does it? I definitely want to continue with work although I’m thinking about perhaps going Private so I can have more say on my hours and the days I do to help work around how I’m feeling. I work for the NHS here in the UK so there’s lots going on that I think I would be happier getting out of! Xx
Reblogged this on Dream Big, Dream Often.
Good morning Jen. My neurologist, at my last visit, told me I had PPMS. I questioned her about that, and as we went back into my history, I begin to understand why she had that diagnosis. I had always thought that PPMS went really hard and really fast. But she said that if your symptoms continue to get worse without a relapse, then that fits in to the PPMS diagnosis. And as I look back on my life, I can see that is true. I’ve never had a period of symptoms going away. They’ve always gotten worse. However, my PPMS seems to have moved slowly. Which I guess, in a way, I am blessed. I started Ocrevus a month or so ago, so we’ll see what happens in the future!
Hi Jo, and thank you so much for your story. MS is funny, isn’t it? There is so much variation but yet we are going to the same things same emotions too. I love that you stay so positive despite having MS. Best of luck for the new medication I hope it helps you and I will be keeping my fingers crossed that everything goes well xx
Thank you so much. Blessings back to you!
My MS progressed from RRMS to SPMS about 2 years ago. I no longer have relief from symptoms, but the body and mind works to protect you. Once you get over the initial jolt life should return to normal. It does get tiring dealing with the pain and symptoms, but each day rolls into the next and you wake up and get busy. You are strong and you will overcome! I know it!
Danny
Thanks Danny! I had suspected it, just a bit of a shock to have it confirmed! I’m still the same Jen and will keep going! X
I struggle with being compassionate towards others who are not “feeling well”. Do you struggle with this also?
Sometimes. Do you mean others with MS or without? I guess it is how people deal with it, I am a big believe that even if you feel rubbish by taking steps to feel better it can help our general outlook. Often it is down to personality/other stresses that can impact on how unwell people feel. X
Without MS.
Oh yes then 😂
You have done more than bloody well carrying on with work – you have done AMAZINGLY well… and continue to do so in every aspect of your life including your positivity. Good luck with the phased return to work and am pleased you have a quiet weekend away on the horizon too. xx
Thanks so much Hayley 🙂 Xxx
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