Post-Exertional Malaise: How to Cope with Crashing After Activity
What’s it really like to live with chronic illness every day? How do you deal with the physical symptoms, emotional turmoil and practical problems? In this interview series, real life ‘spoonies’ share their experiences and tips.
Jenny Clarkson is a 30-something speech and language therapist from Lincolnshire, England. On her blog Tripping Through Treacle, she shares her story about stumbling through life with Multiple Sclerosis (MS).
Tell us a little about yourself.
I’m Jenny, a 39-year old mother of two who loves reading, music, films, food and crochet. I live with my husband and kids in Lincolnshire, UK and work 3 days a week as a paediatric speech and language therapist. I also have Secondary Progressive Multiple Sclerosis (SPMS). MS is a chronic disease of the nervous system, where nerves become damaged and unable to transmit messages successfully. Unfortunately, there is no cure and I have my down days, but on the whole I try and stay positive and am so grateful for all that I do have. I blog about living with MS at www.trippingthroughtreacle.com.
When did you first get sick?
Looking back, it was actually when I was 13 years old and I had my first case of ‘optic neuritis’ (blurring in the vision in one of my eyes). This resolved after a few weeks and nothing was diagnosed, but two years later, in 1994, I suddenly had numb legs which meant that I couldn’t walk properly for 2-3 weeks. This lead to me being diagnosed with Relapsing Remitting MS (RRMS), where problems can come and go. I only just recently had it confirmed that I am now SPMS – the progressive stage of MS, with a build up of loss of function.
In what ways does having MS affect your daily life?
In every way! I was ‘lucky’ when I had RRMS in that I only had the odd relapse, which would resolve within a few weeks. I didn’t really have any symptoms outside of the relapses, and led an active life. I started noticing walking difficulties about 6 years ago (that did not resolve) and, since then, my walking has got much worse. I now use two crutches or a scooter. My left leg drags and I am unsteady and trip up.
In addition, I suffer from fatigue, which makes it really difficult to have the energy to do things that I want to, like go out with my children or out on a date with my husband. I still do these things, to some extent, but I then pay for them the next day and have to stay in bed! SPMS means that I find it difficult to work, be active with my kids and keep an active social life.
How do you handle everyday practical problems?
I accept help! My husband is fabulous with the kids and keeping up with the food shopping. Our families offer us help with child care and taking the kids to their out-of-school activities if needed. At first I was reluctant to accept help, but now I know how much it benefits me and I am so grateful to everyone.
In regards to the kids, I make sure that the time that I have with them is quality time – I might not be able to be active, but I can play board games, card games, read with them and enjoy movie marathons.
Housework can be hard, as my mobility issues and fatigue get in the way. As a result, I don’t do too much at once and I have learned to lower my standards a bit! My husband helpfully does his share, I try to get the kids to take some responsibility for their own mess and I often clean/tidy as I go along, sometimes cleaning the shower screen whilst I’m in the shower.
Luckily, I don’t have too many problems with self-care, everything just takes a lot of energy now. I use a shower stool to bathe, which helps save my leg and, ultimately, I listen to my body and plan – I give myself longer to shower so that I can rest if needed afterwards, for example. It can be frustrating as the ‘little things’ that I used to do (e.g. keep on top of my nails, doing face masks etc) often fall by the wayside, but I am trying to factor in the time and energy to do these things as I know that they can give me a good pick-me-up. I often ask for vouchers towards beauty treatments for birthdays and Christmas!
Do you have any tips on coping with symptoms? Is there anything you can do to prevent flare-ups?
My number one tip is to listen to your body; if you feel that it is getting too much, try to slow down and take the time to rest. Often easier said than done! I have to stagger my annual leave from work, as I rely on taking ‘rest days’ – for me, this means taking a day when the kids are at school, which I feel guilty about, but I know that I can truly do nothing then.
I don’t really get flare-ups, as such, as my MS symptoms are pretty constant, but I know that eating well and taking the time to do daily stretches helps a lot with my fatigue and spasticity.
I feel like it is really important to let go of any guilt that I may feel in regards to putting myself first; it doesn’t come naturally and I often worry about what others think and that I am missing out. But I know deep down that the important people will understand and want me to be as well as I can be.
Being chronically ill comes with a lot of psychological challenges: feelings of sadness and grief, losing a part of your identity, anxiety about the future or a lack of support from family and friends. How do you deal with the emotional and social side of having a chronic illness?
This is a big thing for me and I have spoken about it before in my blog. It really comes in waves; I feel like ‘me’ inside, but I know that I can’t do all the things that I used to be able to do and that is so hard to come to terms with. I used to do a great impression of Axl Rose dancing! I don’t think that I have fully come to terms with it all, but I guess that I just try and appreciate the little things – spending time with my kids (when they are well behaved!) or sitting out on a nice day, or watching a good film. I have a simple gratitude journal where I can note down things that I am grateful for.
I know it is hard for my husband and family and that leads to a lot of guilt; but I have to tell myself that it is not my fault and that I am doing everything that I can to be as well as possible with my MS through adjusting my diet and trying to be as active as I can. I find that taking the time to do a bit of meditation helps – I was sceptical at first but it helps to keep me calm. I am also not ashamed to say that I am on anti-depressants – they help to take edge of of my anxiety around socialising (will there be a seat that I can sit on? Will it be accessible?) and are an important part of taking care of my mental health. I have also thought about some counselling; I haven’t had it as yet but I am sure just talking about my worries would help me.
How do you keep joy in your life on a day-to-day basis?
As much as it tires me out, I do make time to do things that I enjoy, such as going for a meal with my husband or enjoying a local band. And, as I mentioned above, I appreciate the ‘little things’, like a lovely glass of red and a nice meal on a chilly autumn afternoon, while keeping warm and relaxed at home. I received a lovely facial oil last Christmas and I still use it every day, which is a tiny bit of luxury to enjoy.
Lastly, my kids bring me so much joy; I love seeing them grow and change – they are getting to the stage where we can have some fab conversations, they have great senses of humour and they have their own interests and opinions. I look forward to the future with them, but not my MS.
What would you like to tell others who are diagnosed with MS?
After everything that I have said, I would like to get it across that, although life with MS can be hard, there is still so much to appreciate and enjoy. Not everyone ends up having SPMS. I unfortunately was not offered medication (as it wasn’t as readily available in 1994) and I know that research shows that the reduced inflammation that medication helps towards may have a positive effect on the long term outcome of MS. There is also evidence around the role of diet and lifestyle and how this can impact on progression (I follow the Overcoming MS programme).
Don’t let it stop you living your life to the full – I did a parachute jump from 15,000 feet a few years ago and I don’t know if I would have done that if I hadn’t been diagnosed with MS. Finally, rely on friends and family – special ones will always be there for you and will provide so much physical and emotional support. There is also so much help and understanding from the online MS community. You can do this!
For more information about living with MS, head over to Jenny’s blog Tripping Through Treacle.
Do you also suffer from chronic illness? What helps you deal with the debilitating symptoms and stay positive?
If you enjoyed reading this article, you might also like:
- Beyond Bubble Baths: What Self-Care Really Means When You’re Chronically Ill
- How to Cope with a Neurological Condition: Rhiann Johns on Pain, Pacing and Positivity
- Hope in Times of Chronic Illness
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