A Year in Review: Secondary Progressive MS
Can you believe that 2019 is upon us, how crazy is that?! I definitely think that it is true that the older you get, the more quickly the years go by — the other day I was thinking about how my son is only a year younger than I was when I made the life-changing move from Canada to the UK, and I still remember it vividly.
Any readers out there with a chronic illness will know that the idea of celebrating the passing year and welcoming the new one in is bittersweet; although we can appreciate everything that the year has given us, the idea of ‘what will happen to me over the next 12 months?’ is a massive worry. I’ve had MS for 25 years and Secondary Progressive MS (SPMS) for approximately 7 — each year gets harder. I have written before about how hard it can be to look to the future when your future is often so uncertain. Nevertheless, although I don’t tend to be one for New Year’s resolutions, I do like to look back on how much has changed — or not — over the past 12 months. This year it has been a real mix — shall I start with the positives?
My Achievements
Made a Positive Choice to Start Treatment
One of the most challenging — but also positive — things that I have done this year is having bitten the bullet and started some treatment for my MS, This has been in the form of HSCT treatment, and I am currently in the middle of it. I go back to the hospital in a couple of weeks in order to complete it. Without going into the details, it is basically like ‘rebooting’ my faulty immune system by using chemotherapy and having a stem cell transplant to build a new immune system. Please have a read of my HSCT Chronicles for more details. It was a massive decision to take but, ultimately, I feel like it is the right one. My brain and spinal cord are still developing new lesions that could lead to even further disability in the future; HSCT hopes to halt this. It isn’t without its massive drawbacks — time away from the family, intensive and invasive medical procedures — but I am glad that I am not entering 2019 with a massive ‘what if?’ hanging over my head. At least I can say that I tried whatever it takes to get my MS under control.
Achieved my Reading Challenge
I’ve always loved reading but chronic illness got in the way of that — until this year. At the beginning of 2018, I set myself a ‘reading challenge’ on my Good Reads account to read 20 books this year. It might not be much to some people, but I am pleased to say that I have achieved it. I have also joined an online book club that I dip in and out of and I recorded here is what I read from January to June. In addition, see below a few of my favourite reads from this year — have a look out for an upcoming blog post on what I read from July to the end of the year
Achieved Parenting Goals
My number one wish is to be a good mother; to be there for my children to help guide them through life and to support them in becoming independent and responsible adults. Now that they are 11 and 9, it is a case of supporting them through the ‘tweens’ and the challenges seem to be more emotional in nature. In 2018, I managed to attend most of their important school and sporting events, give regular cuddles and neither of them has broken any bones. It’s a win!
Became Frugal and Ethical
I like to think that I wasn’t a spendthrift before but a lack of disposable income this year has made me love eBay, charity shops and upcycling even more than I did before. Also, how much are we being made aware of the environment in the UK? I am in no way saying this is a bad thing; I absolutely love David Attenborough — at the moment we are watching ‘Dynasties‘ as a family and we are loving it. But he and others have brought so much attention to the fact that the earth and animals are dying that it has made me even more aware of the state of the planet than I was last year. Again, eBay, and charity shops are my friends, as are ultra-natural cleaning products and self-care products. I might not be able to go out to Romania to help children with speech and language problems because of my MS like I always wanted to, but I like to feel like I am helping the world in a small way.
Continued with my Love of Writing
I know that I have said before how much I value the opportunity to blog about my life living with MS. In a completely selfish way, writing helps me to make sense of the thoughts in my mind so that I don’t sit and dwell on them for ages! It also gives me the chance to ‘work‘, Ok, I might not be being paid, but taking the time out to write and then hearing positive feedback from others who are going through the same challenges as I am, makes me feel useful and like I am helping in some small way. This year, I have cemented friendships with other chronic illness bloggers online and, as a result, have a group of friends who really ‘get’ what it is like to live with chronic illness; I appreciate and value that so much.
Took Steps to Stay Healthy
I started the year with a continued commitment to keeping as healthy as I can be with Secondary Progress Multiple Sclerosis (SPMS). For me, this meant sticking to the Overcoming Multiple Sclerosis Recovery Programme (OMS) as far as possible. Have I ‘recovered’ from MS? Hell no. But I still feel like I am doing the best I can be, having had MS for over 25 years. I have managed to adhere to the low-saturated fat, dairy-free diet that OMS extols and the meditation aspects of the programme. In fact, I even set myself a challenge at the beginning of the year to kick-start myself back into regular meditation by meditating every day for a month. I achieved this and have since maintained regularly focussing on the breath through either meditating with an app or through yoga practice. OMS also recommends regular exercise. I’m not able to work up a sweat in the way that I used to, due to my heavy MS legs, but this year I have maintained a regular yoga practice with the help of Yoga with Adriene on YouTube and I also purchased both an ‘air strider’ and some exercise bands to try and keep my body moving. It has often been difficult, especially with my fatigue levels, but I know that I feel so much better mentally when I make an effort to exercise, even if it on a small amount in comparison to what I used to be able to do. It might not have made my MS better (more on that later) but how do I know that I wouldn’t have been even worse if I hadn’t made the effort? I am proud of what I have achieved in regards to taking care of my body this year.
My Challenges
I’m going to try not to dwell too much on the challenges I have faced as I have spoken about them many times before! When I write them down I can see just how much one challenge leads to or influences another:
Worsening MS Symptoms
As much as I follow the OMS programme to try and keep myself as healthy as possible with MS, I am not kidding myself that it is curing me. Don’t get me wrong, I am a great believer that if I was to start when first diagnosed way back in 1994, I would have a different outcome to what I am facing now (see Rachael’s account on how she had ‘no evidence of disease activity’ on her most recent MRI). I feel like my walking has worsened as has my fatigue levels over the past year. My legs are more spastic, I find my left one in particular difficult to bend and I get a lot of knee pain. I keep going with OMS because maybe, just maybe it is stopping me from being worse than I already am. And, regardless of my MS, a low saturated fat diet, exercise and meditation is a healthy lifestyle to adhere to anyway.
Difficult Treatment
As much as I am hoping that the HSCT treatment will have a positive effect on my MS, halting the ever-present lesions, it has been really difficult. I have been away from the family and the experience of having chemo whilst the medical staff forgot to give me anti-sickness meds was not fun. I have more to come in early January and the nurse in charge of my care has warned me that I am likely to feel very poorly. Despite this, I am going to focus on the (hopefully positive) outcome go forward feeling strong and ready to tackle the treatment.
Finishing Work
The biggest lifestyle change that I have made over the past year is stopping my job in the NHS. I am a qualified speech and language therapist but the working week was just become too tricky to keep going with my MS. It was undoubtedly the best decision for me but I do miss working with the children and making challenging and complex decisions. I’m hoping that when my treatment is over I might be able to take on a private client or two a week to keep my hand in doing the work that I love. I have to admit that losing this important part of me has been hard; I guess that is why I like the idea of helping others through this blog.
Money Worries
A lack of work means money worries. I have qualified for an early ill-health pension but this is not comparable to the money that I used to earn and adjusting from being the main wage earner to only bringing in a small amount has been difficult for me and my husband. This is where living frugally and ethically steps in! We have sat down and worked out our budget and what changes have to be made, but I am always on the lookout for further frugal tips, so if you have any let me know!
So, reviewing my year as someone with Secondary Progressive MS — it’s been a year of change. Change in my health, my work and my conscience. These changes have made me feel stronger — mentally and physically — more committed to myself and my health and more determined to keep going.
What about you? How do you feel your year has been? Do you have any resolutions or things that you are looking forward to next year?
Originally published at trippingthroughtreacle.com on December 31, 2018.
