Jenny It’s April! Happy Spring everybody 🙂 It has actually only just started feeling vaguely more Spring-like here in the UK recently – Easter holiday weekend was full of rain where I am, but I am pleased to say that I still managed to get out for a walk (scoot, in my case) with the family on Good Friday and the school holidays mean that I am spending more time with the kids, so I am feeling happy. I thought that it was time for a quick catch-up about what I have been up to over the past couple of months, time seems to go by so quickly. I always think that I have nothing to update you on, then I realise that quite a lot has changed for me, even if they might be ‘little’ changes to everyone else!
New blog theme
You may have noticed my new blog theme – I really hope you like it. I saw the new year as a time to make changes in many areas of my life, and this has extended to my blog. I am still finding my way a bit, but please do let me know what you think of the new blog theme. This year, I aim to extend my blog a bit – still with an emphasis on MS and chronic illness but also maybe to bring in my other interests too. Health permitting, you will see new content over the coming year – is there anything you would like to see in particular?
Books, books and more books!
I’m pleased to say that joining The Surviving Life Book Club (an online reading group) has been one of the best things I have done for myself this year, in terms of broadening my horizons and using my brain. I have always liked reading, but it is so easy to spend your ‘reading quota’ on social media, so I had got out the habit to regularly read books. I love proper books, i.e. paper and pages, though I completely understand the merit of audio books too – my husband loves these. I have a Kindle, but there is something that is satisfying about working your way though a real-life book and seeing the end getting nearer. So far this year, I have read:
This Must Be the Place by Maggie O’Farrell
The Husband’s Secret by Liane Moriarty
Everything That I Never Told You by Celeste Ng
The Night Circus by Erin Morganstern
Eleanor Oliphant is Completely Fine by Gail Honeyman
and I am in the middle of A Tree Grows in Brooklyn by Betty Smith, which I am really enjoying.
I know that I wouldn’t perhaps be considered a prolific reader, but I had planned to read at least a book a month for 2018, so I am well on my way. I try to read before bed as a way to relax without looking at a screen, I have just realised that all the books above have female authors – this isn’t intentional, and I am always up for hearing about new, recommended reading material. Online book reviews might be one of the ‘extras’ that I add in to my blog, so keep an eye out.
Work
As many will know, keeping up with my work whilst also having Secondary Progressive MS has been a struggle. March made me realise that enough is enough – I had no life outside of work at all, fatigue was worse than ever and word-finding difficulties were starting to encroach on my work as a speech and language therapist (which, as you can imagine, is very inconvenient!) For now, I am on long-term sick leave and we’ll take it from there, with trips to see the Occupational Health doctor planned and a form to fill out for retirement due to ill-health. It has been a massive decision, but I know that it is the right one for me, my health and my family.
Symptoms
Unfortunately, stopping work seems to also have coincided with worsening and new symptoms of my MS. My walking and balance is worse than ever and it prompted my Dad to ask me if I had considered using a stick or cane in the house… I have but I have been have fighting it so far. I tend to ‘wall walk’, always having my hand on something, which helps. The need to make sure the floor is kept clear is paramount, as is frequent sitting down. Along with mobility and balance issues, my left leg is ‘locking’ more often, particularly when in bed, which can lead to a poor and painful night’s sleep. Finally, I have noticed that the right side of my face is slightly ‘numb’ – not mobility-wise, thank goodness, but in terms of feeling (sensory issues), and that this sometimes goes to my tongue…. which then impacts on my speech. To say that I feel a bit frustrated is an understatement and I think that lead to me…
…Falling off the wagon… a bit!
As many will know I truly believe that following the Overcoming Multiple Sclerosis programme helps me to feel as if I am doing everything that I can to stay as healthy as I can with MS. This means that I eat a mainly plant-based diet, with low saturated fats, some oily fish and no dairy or meat. I take Vitamin D and Omega supplements, meditate and exercise as much as I can, albeit mine tends to be gentle yoga. Research shows that those who follow a low saturated fat diet tend to show less disability and progression, compared to those that do not, particularly those that start it early in the disease, but even those with disability at the start fare better than those who do not follow the eating plan. Well… I knew all this, yet still I have had a bit of a hiccup and over the past few weeks I have not been as careful with my diet as I should be, having some cheese here and there, going for the vegetarian choice in the restaurant rather than the item that may be more OMS-friendly. Everyone says ‘live a little!’ but if my increased symptoms are anything to go by, ‘living a little’ means more problems, so I am happy to be kicked up the backside to be honest.
Feeling more determined than ever
All the changes have made me feel a bit apprehensive as to what is to come – with my health, my work and my life in general. I have to admit to feeling low about work, about ‘admitting defeat’, though I know that I should be praising myself for making a hard – but the right – choice, and putting my health first. I think feeling low perhaps made me take the eye off the ball about the diet, which then made feel worse etc etc. But I think that this low time has also actually helped me become determined to get back into helping myself again. I first read this poem when I initially started looking into lifestyle changes a few years ago, and it is still helps me to think positively.
It Couldn’t Be Done
Somebody said that it couldn’t be done
But he with a chuckle replied
That “maybe it couldn’t,” but he would be one
Who wouldn’t say so till he’d tried.
So he buckled right in with the trace of a grin
On his face. If he worried he hid it.
He started to sing as he tackled the thing
That couldn’t be done, and he did it!
Somebody scoffed: “Oh, you’ll never do that;
At least no one ever has done it;”
But he took off his coat and he took off his hat
And the first thing we knew he’d begun it.
With a lift of his chin and a bit of a grin,
Without any doubting or quiddit,
He started to sing as he tackled the thing
That couldn’t be done, and he did it.
There are thousands to tell you it cannot be done,
There are thousands to prophesy failure,
There are thousands to point out to you one by one,
The dangers that wait to assail you.
But just buckle in with a bit of a grin,
Just take off your coat and go to it;
Just start in to sing as you tackle the thing
That “cannot be done,” and you’ll do it.
***
On that note, I hope that you all have a great week ahead 🙂
I promise that once the work issue is resolved/finalised then how you feel will be improved. Prepare for a bit of a rocky road (too long off work sick triggers disciplinary procedures which is terrifying) but eventually everything will settle xx Karen
Thanks so much Karen, I know it is a fine balance with work – I will be medically dismissed as they have done all the ‘reasonable adjustments’ but I somehow need to apply for the pension before that happens. Scary! It helps to know others understand xx
My pension application was in progress but not completed (HR hiccup) when I got dismissed but because it was in progress it went through. ATOS do the medical decision making but were surprisingly no battle was needed x
That is good to know – fingers crossed it will be the same outcome for me. Xx
I did exactly the same last year with falling off the wagon a bit. I was feeling really down so started nibbling through foods I shouldn’t have been… I was doing it for months though!
And keep positive about work. I agree with Karen, once it’s all sorted it will be much better. 🙂xxx
Thanks so much Heather! I think it’s completely normal to fall off the wagon? I suppose the important thing is getting back on it 🙂 xx
Great to read what you’ve been up to Jen. Love the new look of your blog! With regards to suggestions, I’ve always enjoyed your recipes – healthy & simple! I’m really sorry you’ve had a tough time lately. I feel as if I need to start being extra healthy again too, to help myself as much as possible! Wishing you a lovely Spring 😊xx
Thank you so much Emma 🙂 I’m glad that you like my new blog, I just fancied a change really. New recipes are definitely on the cards, I quite often get them from other places on the Internet though, so can’t take credit for them all the time, ha ha. Today was a lovely spring day, I even managed to get burnt whilst watching the kids outside 🙄 fingers crossed it will make the same mistake over the next few days xxx
Loving your new theme Jen. I feel excitement for this next phase of your life 🙂🙃🙂 It’s a beautiful day here in England and we have lots to be thankful for.
Thanks so much! Sorry for the lack of comment till now, I am still getting used to how to do it on the new blog theme! x
I think you are an inspiration. I just wanted to say that. 😊
Thank you Jamie, that is a lovely thing to say, I feel exactly the same about YOU!!
Like the new blog theme!. Really can’t wait for spring to finally get here…tired of being cold all the time – but then again, even in 20 degrees, my feet will still be stone cold!. All the best on the work outcome…and you are right, dont see it as a defeat. Must be hard, but look on all the things to come in the future. Keep smiling. :).x
Thanks Toni! I bet that our spring still feels like your winter, ha ha. My sister often tells me that it never really gets cold in Australia, where they are at least. I got out today, but even managed to burn myself watching the kids, that’s how pale I am! Xx
Yes, it used to feel like winter in spring, but I’ve been here so long now, I really shouldn’t compare anymore! Cant believe you got sun burnt!. I’m definitely in need of some more sun – and want it to last more than two days!. x
😀
I loved reading your update and I completely understand your thoughts on leaving work. I was there myself around a year ago and it’s a scary place to be. If I’d had any idea that things would have worked out so well for me it would have made the whole process a lot easier! I had to remind myself not to feel bad about leaving and stop thinking of it as a choice I’d made, rather something that had to happen due to my illness. It was hard at first to adjust, especially when I was endlessly waiting to find out if I would receive a pension, ESA etc. Then once all that was sorted out it took me a while to start making the most of a retirement with MS. That’s why I’ve been a bit quiet on the blogging front recently. I decided to ease up on myself a bit and just concentrate on relaxing and putting my health first and I feel great for it. I know you say you’ve fallen off the wagon with OMS recently but you inspired me to start last Summer and I just wanted to thank you so much for that. I obviously still have many limitations due to MS but I’m also really encouraged by the gradual improvements I’m noticing. I’m sharing this to let you know that being dedicated to my health and fully determined is adding a lot to my life just in case you wanted some added inspiration?! I’m wishing you all the best with your renewed efforts and sending plenty of encouragement to you, as someone who inspires me a lot! Thank you as well for mentioning the book club, it’s great that you’ve been enjoying it as much as I have! xxx
Thanks Natalie, it does absolutely give me more inspiration, thank you 😊 I’m back on it now and feeling much better for doing so. I’m sure that everything will become a lot easier once I fully find out about work/pension etc, it is the waiting around that’s hard! Also, I need to thank YOU for the book club, it’s made such a difference to me, because it’s given me something to really focus at a time that I have found really difficult, so thank you so much xxx
Hi Natalie, I replied to this but I don’t know if you got it? Sorry if not! My new blog is a bit of a minefield and I seem to have two different places to reply now. Anyway, I just wanted you to know that I really appreciate your comment and support – I think about you often and keep thinking ‘stay strong Jen, Natalie’s been through it!’ It is the timing that is nerve wracking as the pension and the ill health dismissal are happening alongside each other. I am so glad that you are finding improvements on OMS, it definitely inspires me to know that I may feel a lot better just by concentrating on myself and my health needs. Hope that you are ok, taking time out sounds really sensible and I hope that it is helping. Take care lovely xxx
Thank you for introducing me to the Book Club. I love it! I found that I have significantly deteriorated since I was let go from my longstanding position, out for almost 18 months, “walked” out after 5 months and have deteriorated to the point that I am using a walker. I attribute some of it to the lack of forced activity. And yup, I wall surf and am thinking of a cane in the house, not sure what’s worse.
And yes, food has an impact, went off the rails totally in December and that, lack of drug, definitely was a setback. LOVE the poem, thank you for that
That you so much! Sounds like we are the same physically, which is hard isn’t it? And so glad you enjoy the book club, it has really made me feel like I have a bit more ‘purpose’, which i know sounds silly but I have found a renewed love of reading 🙂
Hi and sorry for my late reply! Still getting to grips with my new blog theme 🙂 I’m glad that you love the book club, I love it too. And I am sorry to hear about your deterioration since leaving work – I am really trying to stay active, but it is hard when the sofa beckons. Thank you so much again for your comment 🙂 x
it really is all about determination, isn’t it! There’s a lot of talk about being resilient. I think a big part of Being resilient is the intentional, determined will to move forward. I refuse to let MS rule my life! I think I’m about 85% successful! Onward and upward! ❤️❤️
I definitely agree with you JoAnn, we need to keep going and it makes us stronger! All the best to you x
I just want to tell you how much I appreciate every word you write. You are such an inspiration to anyone that has the privilege to read your posts! I love how positive you always remain and hope I can continue to keep my optimism as much as you do. I am so happy to hear the weather is warming up for you in the UK. It seems the weather can not make up it’s mind on what season it is.
I hope you have a wonderful weekend my dear!!
Thanks Alyssa, that makes me feel so happy 🙂 Typically it is cold again here and the heating is back on – brrr! xx
I love that poem! Lately I have been trying to tackle some repairs very slowly around my home that I have never done before and sometimes I fail but continue to try till I can finally succeed in some of them and I am the one who thinks it cannot be done! I have been so proud of myself when I actually succeed in something I thought surely couldn’t be done by me. They are small things but huge victories in my eyes because if I were well it wouldn’t be nearly so difficult. Anyway thank you so much for sharing that poem. I wish you well and think you are doing the right thing for yourself. When I first had to quit my job 12 years ago I was devastated. Not because I loved it that much it was just so hard to admit that I could no longer do it. I know now it was the best thing for me of course. Everything will work itself out for the best. 💗
Thanks so much Gloria 🙂 I am sure it is the right thing to do, just hard to admit it. It helps to know that others have been through the same x