Jenny 
As I am sitting here in the hospital, having my HSCT treatment, I have had a lot of time to think about things. There is nothing like spending 24 hours a day alone to get you thinking, eh? I’ve realised that I have a protective cloak. Let me explain:
I’m Jen and I have MS. I feel like I have always had MS (diagnosed almost 25 years ago), I have had it longer than I haven’t and it is a part of me. Not who I am, but one of those things that makes Jen, Jen. Wife, Mother, Speech Therapist, yoga lover, tidy freak, home bird, fitness enjoyer, foodie, crafty lover of interiors. MSer.
What got me thinking…
There was one comment on one of my blogs posts that got me thinking though; someone pointed out that maybe I celebrated the fact that I like being at home that little bit too much. That maybe I didn’t really consider the fact that I have Secondary Progressive MS (SPMS) and the reality of the resulting change in my lifestyle honestly enough. That it isn’t good being stuck indoors or missing events I would have gone to before. Indeed, I can’t get out to work, I forego plans often and have to nap every day.
I completely and utterly appreciate what this reader was saying and I am sorry if my post about loving my home-life came across as disingenuous, but the reality is that it was sincere. Would I feel the same if I was 100% homebound? I am entirely sure that I wouldn’t; but my reality is that, despite my physical limitations, my fatigue and my diagnosis of SPMS, I do still love being at home. It is part of me, Jen. I would be the same, MS or not. And I do manage to get out and about. Maybe not by the same means as before (hello crutches, scooter and car) or to go to the same events as before (stairs in older buildings are my nemesis, of which our old market town has many) as before I started getting sick, but I do. And those little chunks of light are what see me though, even if I can’t always go or have to spend time recovering for days after.
This is where the protective cloak comes in
I have written before about how I am a ‘glass-half-full- type, a generally positive person. This doesn’t mean that I think that the limitations that MS imposes on me are not completely and utterly shit, but it does mean that I feel more able to deal with them, and I am so glad that I have that about me too. Do I need to work at it? Of course. Do I get really down days? You bet. But this part of me, the part of me that makes me generally try to see things in a positive light is a bit like a protective cloak.
I liken my cloak to Harry Potter’s ‘Cloak of Invisibility’ (my son will be impressed with that!) – no-one can see it but it is helping me to try and avoid bad things – which, yes, might be the true reality of my diagnosis of chronic progressive disease. And the fact that MS is so bloody unpredictable that, if I stopped and thought about for too long a time, I would spiral away from the Jen that I am now. For now though, despite my limitations, I do still see life as good. I have friends and family that I love and who are so completely supportive of me, my needs and all that I do that I can’t thank them enough. I have my interest areas above and I try to see my limitations as a chance to do something new that I might not have considered before (teaching myself macrame, as opposed learning to scuba dive, for example).
So this protective cloak is part of me and I am pleased that I have it.
***
I hope that these warblings make a bit of sense! I think that I am trying to say that I appreciate and acknowledge that I might not feel the same way if/when my circumstances change and that I don’t expect people to agree with me. But this blog is the most open and honest thing that I have ever done and I would never write something that I don’t truly feel.
‘Til next time
I see you as always being genuine, your open and honest. Your positivity always leads. Obviously you have down times because you’re human! but you don’t lead with negativity.
We all have a cloak Jen, we all need one for protection 🙂 I too am very much a home body because that is my choice, I choose where to go and what to do because it suits me.
I had a friend who would be constantly telling me where she was going and what she was doing, she would always lead the conversation with “ What are you doing this weekend”. It felt like a competition. She just could not get that I loved being at home.
I remember encouraging you to give up work and enjoy life which I believe you do working around MS but not letting it rule your life. New hobbies were found and enjoyed.
The fact that you are currently in the process of HSCT clearly tells me that you have great strength and determination. You my good friend are certainly not a quitter.
Sending 🤗 I’m looking forward to you coming home then we can compare weather conditions tucked up in our respective homes living and enjoying life with whatever cards we’ve been dealt with 😉
Elaine xxx
Thank you so, so much for your lovely comment Elaine 🙂 You are right, I remember you talking about work and giving it up was daunting but also the best decision that I ever made for me, my health (mentally and physically) and for my family. About the weather conditions – I keep hearing from the nurses how cold it is, but it’s lovely and temperate here in my little room! xxx
I completely get it Jen and I think I’m quite similar! Yes, this isn’t the life I’d choose for myself but as it’s the hand I’ve been dealt you can bet I’m going to make the most of it! Although there is plenty I miss about my old life and there a far too many limitations I face every day, I can still appreciate the positives. I love that I get to be there more for my son than I would have been as a full time teacher, every assembly and school drop off, after school hugs I’m grateful for and I can’t believe I would have missed them. I’m grateful that I have the time to read and enjoy my favourite hobbies more. I was also extremely grateful that when I was having morning sickness earlier in my pregnancy I didn’t have to try to drag myself into work! Xx
You’re so right Natalie! Thee are so many positives that can result from this illness that are unexpected but so welcome. I love the fact that the kids have me home every day after school and the fact that being at home and meeting your book club has rekindled my love of reading! So thank you so much xx
I could not agree more Jen. I get sheer pleasure I from being there when my kids get home from school. I didn’t have this when I was working full-time in a stressful job with a long commute. I enjoy hearing about their days and helping them with homework (except when they change maths!). I felt so guilty when I only got home when it was time for them to go to bed. I do work 18 hours a week from home and like using my brain for something completely different. It distracts me from MS. We manage fine on less money. My point is, do whatever makes you and your family happy.
Yes! And not feeling too guilty that I actually enjoy the change of pace and the new opportunities being at home does. Thanks Joan x
I don’t have MS but I have other conditions that have totally turned around my life, and the ‘new normal’ means things are unpredictable, that I have far more bad days than reasonable ones, that I am far more limited in what and how I do things. It’s learning to manage the new normal and adjust as best you can. I’ve started more recently to really enjoy being at home, to make the most of it. I guess for me it’s part of coming to accept things a little more and to get a little less frustrated (I still get frustrated though, especially when I know there are things I ‘should’ be doing but my body can’t), and in feeling a little less guilty for the rest that’s needed. I’m more appreciative of the small things, the simple pleasures and comforts of home.
I would say I’m sorry you had that comment and for what it’s triggered, but I actually thing this post in response is a really important one. I love your positivity, and that you can hold on to that, which is so important. Of course you won’t feel positive all the time (heck, that’d be exhausting, and probably impossible) but to be able to see the positives, to be grateful, to be able to approach life the way you do given the ‘new normal’ with MS you’ve had to adjust to, well, I think that makes you pretty awesome! =]
Caz xx
Awww, thanks Caz! Yes, I think that I was trying to get across that, of course, I don’t feel positive all the time (as you said, it would be exhausting and who does?!) but on the whole, I feel ok and that is fine to say that too. 🙂 xx
Hello Lovely Jen,
Your positivity and hopeful, happy approach to your situation is one of the very best things about you. Seeing the silver lining is a great ability and I think it must be so much easier to do that when wearing your shimmering invisible cloak!
Hope the days in hospital ahead start to seem fewer than those behind you …
lots of love
Lucy xxx
Thanks so much Luce! Lovely to hear from you 🙂 I can see the end nearing which is great, can’t wait to see the family and just have my own bed! xxx
Spending my days housebound as well, I can relate to your post. I think perhaps finding comfort in your reality is also very helpful. For it is what it is. Thank you for sharing your thoughts here and hoping today is kind to you. 🌸
Thank you so much! You’re absolutely right that finding comfort in your reality is paramount. Have a lovely day x
I am about the write a blog post about finding comfort in my reality as you have inspired me with your comment! Is it ok if I were to link to your blog? Many thanks 🙂