Jenny The title sounds a bit depressing, doesn’t it? But believe it or not, I am really trying to look on the positive side and see the changes that are currently happening in my life as challenges that will ultimately help me and make my life easier. Living with a chronic illness like Multiple Sclerosis certainly keeps me (figuratively) on my toes!
So, where do I start? Well the biggie is…
Work
Regular readers of my blog know that I have been diagnosed with Multiple Sclerosis (MS) since I was 15 years old, with my first official relapse at 13. During the 1990s and 2000s, I managed to continue with my school and studies, completing a Bachelors degree initially before later becoming a qualified speech and language therapist by doing a Masters. I have worked for the NHS since and I absolutely love my job. I love helping the children, researching and keeping on top of the latest evidence to do the best job possible and I love the colleagues that I have. They are most definitely my second family, having been with the same employer, and line manager, since I graduated all those years ago.
Over the years, I worked my way up from being a generalist therapist, to an Early Years Specialist, to a Team Lead with management responsibilities and a complex caseload. The ability to be able to analyse, adapt and juggle a demanding caseload is paramount… but it can become tricky when your disease becomes more advanced. My work have been fab, adapting my work environment and role to try and accommodate my MS symptoms, such as my poor mobility and fatigue. I spoke about how they have helped me here. But, ultimately, it has come to the point where my life and energy were spent on work (if you know the spoon theory, it is is like work ate up all my spoons!), so this means that my family were getting the dregs. My kids are still in primary school, I don’t want to be a parent who spends the time she has with them so exhausted that I can’t carry out my role as their mother. So, with the support of my fabulous GP, I finally realised that I can’t do it any more. My fatigue was impacting on my concentration, word-finding and memory at work, and I just didn’t feel like I was as ‘on the ball’ as I should have been, and have been, previously.
I’ve been on sick leave since March and, what with my sick leave last year, I have spent most of the last year not in work. Last week, it was time for a case conference… where I was told that my contract was being terminated due to ill health (no longer being able to fulfil my substantive role). The meeting was…emotional to say the least. I know it was the right thing to do for my health and family but hearing my manager say those words were so poignant – I worked so hard to get to where I was with work, it is a massive part of me – who the hell am I going to be if I’m not ‘Jen, the speech therapist’? I cried my eyes out at that meeting, hearing my manager say ‘there’ll be another therapist, but never another Jen’, certainly didn’t help! But, as I have said, I know it is the right thing. Being off work allows me to spend what little energy that I have on taking my kids to school, watching my daughter at her mermaid swimming class and going on date night with my husband. Not being at work means I have more time and the energy to take turns with my husband to make tea and to go on a day out with the kids to a local festival (ok, I couldn’t manage the full two days, but one is better than none). I consider this blog my ‘work’ at the minute. I can only manage to write once a week, writing a post over several days due to my fatigue levels and the numbness of my hands, but I know that some people are comforted by my writing and that spurs me on to try and make a difference.
So now? I’m not sure where life will take me in regards to work. I have applied for an ill health pension, which is a whole different process to being dismissed due to ill health, so I am waiting for the results of that and hoping that it will be agreed and all run smoothly. I am hoping that, over time, opportunities will arise that will allow me to keep my brain working, even if I am not being paid for it!! Keep your fingers crossed.
Now onto something not quite so important but perhaps just as linked to my self identity…
My Hair
I’ve decided to bite the bullet and just accept the fact that my body is telling me that it is aging and just embrace my grey hair! Going to the hair salon every 5-6 weeks to keep up my colour is exhausting – both physically and financially. Spurred on by my want to try and save money, get my hair in better condition and my friend who looks absolutely fabulous with her emerging grey hair (you know who you are!), I am going to do the same. I’m actually quite excited by it and can’t helping looking at hair inspiration on Pinterest and Instagram. The hashtag #grombre seems to be the thing to look to for inspiration. If you’d like to check out my Pinterest page, click here, I am always on the look out for new people to follow and share home, style, food and chronic illness info.
The fact that grey hair is pretty fashionable at the moment and it is a good excuse for new clothes and accessories to flatter my new colouring, are bonuses 😉 I am currently 3 months in and my hairdresser is trying to ease the transition by adding some lighter colours through my normally mid-dark brown hair. I like to think that embracing my grey hair is a sign of maturity and wisdom…. not just a sign that I can’t be bothered, ha ha!
And Now, the Big 4-0
They say that everything seems to hit at once and for me, that seems to be stopping work, big hair changes and turning 40. It is my big birthday next month. If you had told me at 18 that I would be jobless and grey at 40, I would have cried into my celebratory first legally-bought glass of wine. But actually, I feel great. I have always embraced change (I always found it an enjoyable challenge at work if we needed to makes changes to accommodate rising numbers or new evidence, for example), and you can’t get much bigger changes than what is happening to me at the moment.
I’m sure there will be ups and downs. The fact that I will not be earning the same freaks me out and I am looking into lots of different ways to save money. I worry that I will not feel as fulfilled as I did whilst I was at work and I worry that I’ll struggle to keep myself going, emotionally, without any specific purpose.
However…
I can chose to accept these changes. I have already committed myself to taking better care of my health by watching how much I drink and saving up to buy myself a ‘Air Walker‘, which I have used every day since I got it last week. It makes me feel like I am walking, which I haven’t been able to do properly for years! A family member who speaks fluent German has said that she will help me to rekindle my love of language by helping me to re-familiarise myself with the language that I stopped at GCSE level. I can choose to view this time as a new beginning with many different opportunities open to me. I can appreciate the fact that I have been given the chance to give myself back to my family, at a time when it is so important to help my children though guidance and love and to keep that relationship going with my husband at what could be an extremely stressful time.
It is safe to say that sometimes life doesn’t go quite as we planned… but that doesn’t mean that the reality has to be bad. Change can be a massive challenge, and I for one am going to try and embrace it, rather than fight against it.
Have a fab week everybody!
Keeping a positive attitude is more than half the battle. Best of luck to you as you embrace these changes 🙂
Love this post. I’m sure the change at work was a difficult one. But it also sounds like you are happy, and that’s what counts! I’ve decided to embrace grey as well. I have red hair so it’s going white. I haven’t colored for over a year and I’m trying to hold out. So far, so good! Best wishes, Jen!
So scary when you get to that meeting. The matron told me that you might not be working as a nurse anymore but you’ll still be a nurse. But it was honestly the best thing, if i can’t manage what i need to do on one day I do it another. You can’t ring work and say I can’t do my clinic today or ring and say can I see my patients today.
Thanks Karen, it helps so much to know that others have been the same, even though it is rubbish for both of us xx
I feel like I can identify with this so much. This was me 18 months ago! I never imagined I’d be too ill to do the job I loved at the age of 30. It was such a big part of my identity too. I loved being a teacher and helping others, I’d worked hard and led a successful department as well as helping to lead whole-school literacy. I’d just gone back to work following maternity leave and was doing my best to juggle a demanding job with being a mum. Feeling everything I’d worked for slipping away and being powerless to do anything about it caused me so much stress and I struggled to accept it, especially as I felt so awful physically too. I love so much about my life now though. The longer I’m out of teaching the less I miss it and the more I appreciate everything I have now. It is fantastic being able to be more present for my son and not missing out on as much. I would also say, definitely go for it with learning a language. I took up Spanish again a few months ago (also after studying years ago at school) and I’m enjoying it so much, I found a local class I can get to most weeks and it’s great for the social side too. I also use the Duolingo app which is free and it helps to keep my brain working! Sorry for the essay and I wish you all the best with your pension application xx
Thanks so much Natalie and I am sorry that it has taken me so long to reply! I often think about you as I feel like we are very similar in regards to the level of work that we do (did) and how big a change it is to go onto an ill health pension. Everything seems to be running smoothly so far, so that is good. Fingers crossed that it all continues to! I love that I can do things like go to the kids’ sports day without wondering if I can find the energy (I can at least have a sleep after if I use too much). Glad to hear about your Spanish – I like to think that learning another language might be a good excise for a holiday 🙂 xx
Great post! Being 40 (and grey) isn’t that bad! X
Did you notice I mentioned you in my blog? 🙂 xx
Life passages…always so bittersweet. I let my hair go a number of years ago – and get so many compliments on what emerged. I’m just approaching 60, but well remember my 40th – my marriage of 17 years had just ended and I felt as if life was over. You are doing well to focus on what is important and honouring your energy. Carry on! Enjoy your posts.
I’m glad your embracing the grey – I think it can look very natural and chic, so rock it like a trooper!
I’m so sorry about your job, but what a lovely thing to say (“there’ll be another therapist, but never another Jen”) – I had the same thing happen, having my job, a job I loved, terminated due to ill health and continual surgeries. I’m still not sure where I am with it all at the moment because of the financial side of things, and it’s a constant struggle and worry about the future. You have done a wonderful job with this post in trying to accept, take a positive approach and look forward with a renewed perspective. Even when you don’t feel it, please remember that you are awesome, Jen! ♥
Caz x
Ahh, thank you so much Caz, what lovely words! I have to admit, my manager saying that is what set me off crying. I hear what you are saying about the financial side – I have always been our main breadwinner and the kids getting older just leads to so much more expense. I really need to get frugally thinking. I can’t promise that I will always feel positive but I will try my hardest. Knowing that others have been through the same helps so much, so thank you xxx
Great post- well done with excepting going grey. I’m still attempting to remain ginger,but is hard work 🙋♀️
Thanks! Keeping my brown has been hard work as well. I like to think that making the transition early will help! Apparently I am about 30% grey so still quite a lot of brown 🙂
As one door closes another door opens and a great way to start is with a new hair colour 😉
Thank you! If it looks anywhere as good as yours does, I’ll be very happy!! 🙂
I started with highlights to blend in my grey which made the transition easier, I still have some blonde highlights put in twice a year. 😉
My hairdresser lightened my hair a bit, which does seem to help so far. Hopefully it won’t take too long until it is all grown out 🙂 x
It’s exciting I wish my grey would come through fully, there are some lovely grey tints. Grey is no longer associated with age 😊😉
I think they are all wonderful things. I am not ready to embrace my grey but that’s because I’m pretty happy being a redhead. I’d like to be the vibrant red like hot red. Lol. Happy almost 40. It’s all good things.
Thanks Jamie! My brown hair looks a bit coppery in the sun, but it reaaallly doesn’t suit me, ha ha. I am hoping that my natural hair colour will be the best one for my colouring. I’m actually not worried about turning 40, my 30s were pretty eventful with kids, MS symptoms etc, I’m hoping my 40s will be a bit more relaxing!
That’s what I’m hoping with 50. I’m 46. It’s been a long six years
You are so right “things may not go as planned but reality doesn’t have to be so bad”… Hang in there! I was worried myslef when I went from a 50+ hour work week to being a stay-at-home mom. Being home now, since last July, I have come to enjoy it! Taking my girl to school, picking her up and taking her to swimming lessons, cooking, and doing other things for my family is more important than a job. This is pleasurable work for woman who are blessed to have it! Congrats Jen and sorry to your workplace for loosing you.
Thanks so much Christy! I realise that my kids are only little once and I want to make the most of it whilst I have them 🙂 It is nice to have the time to do one on one time with them and not to use up all my energy at work 🙂
Jen my dear, you are such an inspiration! Your constant and undeniable courage gives all the rest of us strength! Your determination and strength is very contagious. I honestly feel honored to have been able to get to know you and follow your amazing journey through this MS life!
Thanks Alyssa 🙂 Sorry for not replying right away, for some reason your comment didn’t show up at first… not sure what’s going on. Thank you so much as ever for your positive comment, I can say the same to you 🙂
No worries Jenny, it happens! I think sometimes WordPress has a bad attitude and things do not work the way they are supposed to, it is just technology!
I as well decided to let nature run it’s course with my hair, and I feel good with it. Had to make the same decision about work a few years ago and never regretted it, even though I loved work.Have fun with German, I am a native German speaker and admire everyone who learns this complicated language!
Thank you 🙂 I studied German at school and remember thinking that it was easier than French, which I was also learning. It really helps me to have something to focus on (and I good excuse for a holiday one day!) x
Love this post Jen. It must have been really hard & emotional having the decision about work finalised. I understand how you feel as my 40th is also coming up this year too (how the heck did that happen?!), and also having previously had to stop my career due to ill health. On to the next phase hey! Sounds like a great opportunity for spending precious time with your family and embracing new things. I’m glad to hear you’re going to continue with your blog, as I always look forward to your posts 😊xx
Thanks so much Emma 🙂 The 40 thing is weird, I still fee 25 inside, haha. I always remember my Mum saying that to me too. xx
Its so hard when that decision has to be made. I was also put in that position 4 years ago. I had cut my hours down to 4 days a week so the 5th day could be for doctors appointments etc however even doing that I still had used all my sick leave and holiday leave and I knew it was coming. So with the encouragement of my doctor I quit work. I was lucky that I went on disability almost straight away. I was scared how was I going to manage. It actually worked out better as I didn’t have to buy clothes for work or spend heaps on travel to and from work. I could finally work on me. I know my situation is so much different to you but I think there is always a silver lining eventually when we find it. Much love to you xx
Thank you so much for your comment! It really helps to hear from others who have got through it all 🙂 I can already notice the difference with petrol etc not costing as much, so I am trying to focus on that 🙂 xx
Sorry to hear about the work situation, but there are bonuses which you have said re family time. 🙂 Excited re embracing nature’s tinsel! – and 40?. I will be reaching level “46” next month and I can honestly say, 40’s haven’t been too bad. 🙂
Thanks Toni 🙂 I am trying to look on the bright side! xx
:).xx
What an awesome post! I’m looking at the big 5-0, so 4-0 seems very young to me 😀 (and I remind myself 50 will seem young at 60 and so on). Having the blog to work on helped me when I had to finish work. It is really important to create and to feel like you’re helping others xx Lowen @ livingpositivelywithdisability.com
Thanks Lowen, that’s how I feel too. I really hope that I can help others through my blog. Thank you for your comment! 🙂 xx
So much goodness in this post!
Your naturally grey hair – love that and can’t wait for mine to start turning too!! I only have about 10 strays on my head currently. Haha… But I think women look so beautiful when they rock the natural grey with a fun cut.
Totally relating to the job loss part – those meetings are brutal – you know it’s coming, but it doesn’t really prepare you for the fact when it hits. But the relief and rest that comes from not having those commitments and responsibilities to worry about on top of your health is good. I am excited for your new beginning!
Thanks so much Char and sorry for the late reply! I am also excited about my new beginning, but scared too in equal measure 🙂 The meetings are brutal, but I know it had to be done. It just makes us stronger, eh? xx
Absolutely. Hugs
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