Jenny When did I stop being me? As I’m writing this, it is a Saturday night. My husband just kissed me before leaving to go on a night out. I insisted he went, by the way – it might be the last chance that he will have to fully enjoy an evening with his (our) mates for quite a while, what with my intensive treatment coming up.
But, I want to be there. At least, in my head (my body says ‘no’). I would have been there, 5 years ago. But slowly, silently, I have stopped being me. Sure, I am still Jen – I still have the same sense of humour, I still have the same opinions. But the Jen now is not the Jen that was here 5 years ago. That Jen would have gone out with her husband. She would have a job that she enjoyed and gained fulfilment from. That Jen had just started the Overcoming Multiple Sclerosis (OMS) Recovery Programme and had high hopes that it would be the ‘cure’ that she needed.
The Jen now is not in work and struggles with nights (and even days) out, because of her Multiple Sclerosis. Despite sticking with OMS, she still has active inflammation in her brain and she realises that she probably left it a bit too late to truly reap the benefits of the Recovery Programme.
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This all sounds quite depressing, sorry! It was a random comment by a pleasant, young and concerned doctor that made me think of all of this; whilst giving her my MS history, she simply said, ‘I can hear that a lot has changed in your life – that must be hard for you’. And she was right. Thankfully, I’m not really a crier; otherwise, I am sure I would have done so in front of her. But I am a thinker. And what she said has really got me thinking over the past couple of days. Luckily, I have been able to find a positive spin on ‘not being the same Jen’.
The reality is that my life has changed immeasurably over the past few years. Right now, especially, I feel like I am in limbo land – I am just about to start some treatment which means that I will be putting my life on hold for a period of time. It makes it hard to feel settled and secure, I guess; I can’t make definite plans for the future. For someone who likes to feel organised and in control, it is hard!
How To Move Forward
Yes, my life has changed. Yes, it is definitely more challenging than it was 5 years ago. BUT… would I not have changed anyway, even if I didn’t have MS? I think I would have. My kids are older; we’ve left the nappies and naps stage behind (well, I have naps, but that doesn’t count 😉 ). When I was younger, I often thought about changing my work and leaving the NHS – who’s to say that I wouldn’t have done that? Plus, as I have gotten older, I have also gotten more houseproud. Now, instead of watching makeup tutorials on YouTube, I watch house renovation vlogs.
Maybe my MS brought forward the Jen that I would have been anyway? After my treatment is done I have the option of still doing a bit of private therapy for work; albeit in much smaller quantities (1 or 2 patients a week instead of 6 in a day!) due to my health needs. The old Jen dabbled in hobbies like crochet and learning to sew; they are now my winter hobbies of choice because I sit down for most of the day!
Maybe my MS brought forward the Jen that would have been there anyway? Share on XI Can Still Plan
The things that I planned in the past might not be so accessible to me now, but that doesn’t mean that I can’t make plans or challenge myself. In the past, I might have set myself the goal to run a 10K race, or go to a 3-day music festival; things that I know I would struggle with now due to my mobility problems and fatigue. But I can set myself new targets. This year, I have found the ‘Good Reads‘ app, which let me set myself a goal of reading 20 books a year. Next year, I’ll make it 30. I also challenged myself to meditate every day for a month and I achieved this, gaining so much in the process. Things that I would like to do in the future include sticking to OMS after my HSCT treatment, to put myself in the best possible position for any inflammation to stay away, to learn German and to sew a simple wrap skirt.
I Know That I am Still Valuable
Sorry, I know that sounds cheesy, but all this thinking has got me reflecting on what it is that I do do. I’m not able to work at the moment and, if I am honest, that is a struggle for me as it really made me feel useful. I liked helping the children and families that I worked with. But I know that I still help others – they’re just closer to home. I’m here for my kids every day after school, I put them to bed every night and I organise their day to day activities like a drill sergeant! Nothing different from any other parent, to be honest, but I am so proud of the fact that my MS doesn’t get in the way of that.
I'm still valuable, despite my chronic illness Share on XI Appreciate What I Have
I have said this before and I’ll say it again; having a chronic illness makes you appreciate the little things more than you ever did before. The other day, I was watching my husband let the kids crawl over his back and mucking around with them. That is what I want to remember – just the family being silly and laughing. My daughter is being extra clingy at the moment, perhaps because she knows that I will be going into the hospital soon; I’m just savouring the extra cuddles. I treat myself every day – to a hot chocolate or 10 minutes playing boggle on my phone – and I try not to feel guilty about it. This is what makes me happy and a happy Jen is a more fulfilled one; one that is confident in herself and who she is.
I Try and Appreciate the Me that I am Now
This quote is so true:
“As long as you make an identity for yourself out of pain, you cannot be free of it.” ~Eckhart Tolle
It is all too easy to compare myself with the old me. I’m not denying that I never do it – but I try really hard not to. The symptoms that I live with are always there but there are steps that I can take to try and live the best life with what I have got. I am no particular religion, but the Buddist mentality suits me best; live in the now. I concentrate on what I can do; this gives me the incentive to keep going and keep moving forward. I do what I can and not what I can’t. I treat my body with kindness and listen to it. I try and recognise what makes it feel good and then do more of it.
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So, no, I’m not the same Jen. Yes, it makes me sad sometimes. And that’s ok. But by taking steps to focus on the here and now, on just how much I still have, I can feel better. Chronic illness has changed me – but in some ways, for the better.
Until next time,
Thanks for sharing Jen. Mindfulness has helped me think about the present here and now. I listen to my body and try to focus on what I can do now. My work situation has changed and my children are growing up fast. You’ve made me think about my goals now and to not look back to what I was before. 😃
Thank you so much for your comment! Mindfulness definitely helps me to be ‘in the now’ and to try not to compare, I always come back to it even if I slip up a bit 🙂
Jen that was beautiful. I’d like to think that who we become is a more compassionate version of ourselves. It wasn’t the Jamie that went out every weekend that made me who I am it was the core values and personalities that makes us a good friend, mother, wife and daughter. I like to believe that doesn’t change because of our illness just evolves. Best of luck in the treatment start.
Thank you Jamie 🙂 What you say is so true, on the outside I am not necessarily the same but I like to think that I am a better version of myself inside. xx
Oh Jen. I so hear you. I struggle with who “me” is. Though my doctor recently told me despite my deterioration, I am still the same Susan but more so.
Exactly Susan, I reckon illness makes brings out all the lovely things about ourselves. It also makes us more aware and caring, which can’t be a bad thing xx
Great post Jen. It is hard some days not to think about the ‘old life’. I often wander down this road. But, I’m grateful for each day also and live in the now. You seem to be looking after yourself, taking ‘Jen’ time, and that’s important. The part time client based work sounds ideal after the HSCT treatment and will give you that boost which we all miss when we are not in work. Who’d have thought we would.miss work so much! Hope you’re feeling ok and look forward to your updates when you are able. Xx
I know, it is funny how important work feels when you’re not in it! xx
Hello! know right!?. And how are you Doing? X
Lovely post Jen. I identify with it all! It’s sooo hard letting go of the old us, but yes, the new us has a lot going for it too! I just need to remind myself of that! Before illness I was too busy doing everything – work, fitness, socialising etc – to really stop and just appreciate each day. Now I love watching the changes that come with each season (and taking a zillion pics of this! ☺️) and just pausing to enjoy those good bits of life. Time with my husband & son, a nice cuppa, losing myself in a good book..! Thanks for the reminder! xxx
A terrific post Jen. I am with you on the power of gratitude. It is also great linking to other lovely bloggers. 🌼