Jenny Does anyone else ever watch YouTube’s myriad of ‘morning routine’ posts like my daughter does (and like I did, until a couple of years ago)? If you’re not familiar, they tend to be filmed by young, beautiful people who already look perfect as soon as they wake and who seem to have the unlimited energy needed in order to exercise, make a healthy breakfast and start work – all by 9am.
Whilst trying to explain to my 10-year old that no-ones life is that perfect, it made me think of what my morning routine looks like, as someone with a progressive chronic illness – Multiple Sclerosis – that I have had for over 25 years.
For a bit of background: I have two children, aged 10 and 12, I have my own – very part-time – business (currently in hiatus due to Covid-19) and I was confirmed as having moved from Relapsing-Remitting MS to Secondary Progressive MS a couple of years ago – though the signs have been there for about 7 years. The symptoms of my MS are pretty consistent throughout the day – poor mobility, fatigue and some ‘cog fog‘, though some days I am even worse than others. Often that may be because I have done too much and I subsequently pay for it with extra spasticity and tiredness, and sometimes there no rhyme or reason why I struggle more some days than others.
My Morning Routine – Expectation Vs Reality
Getting Up – The Expectation:
I will wake up at the same time every day after a full 8 hours sleep and am able to bounce out of bed
Getting Up – The Reality:
I sleep well between about 11pm until 3-4am, at which point I often wake up with sore and painful legs and feet that spontaneously cramp and spasm in my sleep, I guess because my medicine (baclofen and tizanidine, two muscle relaxants, are starting to wear off). This leads to a restless rest of the night before my alarm rudely goes off at 8am, telling me that it is time to get up to see to the kids and ensure that they’re up to eat their breakfast and start their school work. I usually laze around in bed doing some simple stretches before I make myself get up at 8:20, despite feeling like I have had no sleep at all.
Before I go downstairs, I throw a jumper on over my pyjamas, take my morning medicine – 5 different pills and a couple of spritzes of Vitamin D – and brush my teeth.
Making Breakfast – The Expectation:
I will have freshly squeezed juice, a hot coffee and healthy food. I will adhere to OMS guidelines and ensure that the food that I eat is low in saturated fat and plant-based.
Making Breakfast – The Reality:
Actually eating breakfast can be very dependent on whether I am having a ‘good’ or ‘bad’ day. Most of the time, I will stick with coffee whilst getting the kids’ sorted with their breakfast and settling them down to start their school work. I’ll then have a bowl of cereal – healthy granola if I am being good, cocoa pops if I am not. On a bad day, then, I might end up just sitting on the sofa helping the kids out as and when and not doing anything productive myself.
On a good day, breakfast is a part of my daily routine that I manage well. If I am lucky, the coffee pot will already have been filled by the children’s Dad and I can grab some fruit and soya yoghurt, or toast with nut butter and an apple. On a really good day, I will have the energy to make some of my ‘rawnola‘ or even some plant-based waffles (this would usually be the weekend when we have more time).
Exercise – the Expectation:
I would be able to pop out for a jog or do a quick hiit workout in my perfect workout clothes, looking fit and trim.
Exercise – the Reality
Exercise is something that I try and keep up, though my poor mobility means that I can no longer do heart-pumping exercise like I used to love. Instead, I mainly stick to the MS Gym (a programme based on neuro-muscular programming to help you move better) and yoga. I don’t exercise every day, though I wish I did, as I know that it helps me to feel more stretched out and to walk better. I simply do not have the motivation or energy some days and the sofa looks more appealing.
The yoga classes (on YouTube) that I am able to carry out are getting more and more sedate – lots of slow, close to the ground stretches rather than sequences. But I love them as they help me to take ‘time out’ for myself and I see concentrating on the breath and movements as very meditative, which keeps me mentally calm. Here’s my most recent favourite yoga video:
Showering – the Expectation:
I will shower every day, washing my hair and taking the time to do all the beautifying things that I want to.
Showering – the Reality
A shower? Every day? The harsh reality is that if I decide to shower, that is half my day taken up due to the time it takes me to do it and the recovery – often sleep – that I need after. I hate the fact that I don’t shower every day 🙁 I have found that having one before bed at night helps as it means that I can sleep right after. I probably manage a shower about every second day and a wash in the sink on days I don’t.
An Occupational Therapist provided me with a shower seat and a ‘leg lift’ (literally a piece of stiff fabric with a loop at the end to hoist my leg up), so I use these every time I shower. Baths are a thing of the past as I can’t get in and out easily and wallowing in warm water worsens my mobility. I need a bath mat so I don’t slip. So, as much as I do fancy trying loads of lovely shower products, the reality is, I need to be as quick as possible in the shower in order to lessen any risk of my lack of mobility leading to a fall.
Dressing – The Expectation:
My current style crush is Judy from ‘Dead To Me’ – lots of high waisted jeans and skirts and lovely dresses. My expectation is to look stylish and effortless.
Dressing – The Reality:
Joggers, leggings and jumpers… that’s about it unless I am going out somewhere and I have managed to ‘save some spoons’ to make myself look nice. Fiddly buttons are tricky, some earrings are impossible and makeup doesn’t happen unless I am going out. When you’re sitting down for most of the day, comfort is key.
Work – The Expectation:
I am still working in the NHS as a Highly Specialist Speech and Language Therapist. I’ve started working full time in order to have a bit more money now the children are older.
Work – The Reality
After trying many, many different ways of altering my work and making ‘reasonable adjustments’, I had to admit defeat a couple of years ago and take early retirement due to my ill health.
Now that I am retired, I am trying to set up a business of working from home as an independent speech and language therapist. Covid-19 has put a spanner in the works somewhat, but I can already see the benefits: no more early starts to get to work for 8:30 and I can do as much or as little as I like. As ever, the hard thing is getting the motivation going if enquiries are ‘quiet’ and fatigue is rearing its ugly head.
I can’t think too much about work as it still really upsets me that I can’t do it as I used to; retiring was the right choice, but the reality of retiring at age 40 means that your finances are irreparably damaged. I probably would have been working full time again now, now that my kids are older, which would open up so many more doors – to travel or move for example. But that is a whole other post!
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So, that is my morning routine as someone with a chronic illness. I’m not sure people would want to see it on YouTube, lol. What about you? Do you feel like your everyday routines have changed as a result of your chronic illness diagnosis?
Till next time
While it’s heartbreaking seeing the differences so vividly, I think you’ve done brilliant in this post. It’s very eye-opening, especially I imagine for those without chronic illnesses themselves. I find work to be a particularly sore point and losing my job hit my harder than I realised for a while, so I get where you’re coming from with that, though of course your expect experience is uniquely yours. I’m glad the virus situation hasn’t totally derailed your work from home business; I hope it keeps going as smoothly as possible. I also work from home now (ie. attempt to, earning not enough to cover the groceries despite working almost continually but it’s better than nothing). The expectations don’t even need to be unrealistic to hurt when they’re not achievable. Just doing the ‘norm’ and the basics could be our expectation and it’s still frustrating and saddening when we have to admit they’re not possible any more. As for those sorts of morning videos, I’m glad you’re teaching your daughter that what you see isn’t what you get. Oh how I wish I could pop up out of bed fully rested after 8 hours sleep to go for a run and grab a shower before jetting off to the office!
Caz xx
Exactly Caz, thank you so much for your comment. I am struggling with the change in work, I’m half wondering whether I should just ‘admit defeat’ as I worry that I won’t be able to keep it up to an ‘acceptable standard’ as deemed by the governing body of my work. I feel frustrated that I worked so hard and trained so much for something that is so difficult now. You’re absolutely right that it hurts so much when even the basics are unachievable sometimes.Sorry to be on a downer, it helps to know that others understand xx
Thank you for this realistic look at life with chronic pain. I have been diagnosed with fibromylgia but new symptoms are making me question that and consider the possibility of MS. Could you provide your early signs and any advice? I sympathize with your situation and wish you the best. Children at the ages of 10 and 12 still demand attention no matter how understanding they may be. The loss of a career is also a blow to self-esteem. Coupled with little control of your illness life becomes very challenging. I wish you the very best and will keep you in thought and prayer.
Thank you so much for commenting Donna, I am so sorry to hear about your fibromyalgia 🙁 The early symptoms I had of MS included strange sensations on my skin (it felt like I had water running down my back when there was nothing there) and also a ‘blank spot’ in my vision that went away after a couple of weeks. The big thing with my MS, in the early stages, was that sensations and weakness would come and go. I think that is what makes it so tricky for doctors to diagnose, especially if you see a different one every time that you go.
Thank you also for the kind words about my children. Parenting ‘tweens’ is just as tricky as it is toddlers, extra emotions add a whole new level! Thanks again for your comment and I wish you the very best of luck with your health xx
Great post!
It made me laugh, although not because it’s funny, but because of the expectations (or hopes) we put on ourselves. Like you, the hopes and “aspirations” of how I want my days to go, just can’t be my reality. I think it’s great that you highlighted how life shifts depending on how you feel each day.
I miss the super productive mornings and found it to be incredibly difficult when I could no longer get up with the kids.
Well done and I think fantastic that you point out to your Daughter that Instagram (et al) is not a real nor accurate portrayal of life!
Thanks!!
Thanks so much for your comment Stacey! I also miss the super-productive mornings, I have the odd day when I am like ‘old Jen’, who used to get things done, but more often I’m not. It helps a bit that the kids are a bit older so can usually manage by themselves whilst I wake myself up! 🙂
I finally found a real article on the morning routines. And it has helped me understand that my expectations have to be a little more real than social networks or my imagination wants. I am in relatively good health, until some stomach problem attacks me and I end up being operated on for something. It is a bit tedious to establish a routine, enjoy it for a couple of months and then see that routine fall apart because of some surgery or procedure that prevents me from doing it as I want. I am currently recovering from my second operation of the year that does not allow me to sit down to meditate, or stretch my whole body. And getting out of bed is a torture of pain. THANKS FOR ALLOWING US TO COMMENT AND REMOVE FROM OUR CHEST WHAT WE FEEL. THANK YOU FOR BEING REAL AND FOR INVITING US TO BE REAL WITH OURSELVES.
Thank you so much for your comment, Marcela! I really hope that you are feeling better after your surgeries, don’t put pressure on yourself to be like others with so-called ‘perfect’ mornings – remember I am here often struggling too!