Hello again MS Warriors!! This week I decided that I would write a little bit about stress and anxiety in MS.
Dealing with the physical symptoms of MS can be so overwhelmingly and time consuming that we can forget about the emotional and psychological stress that the disease causes. The reason that I was thinking about this recently was because I was asked about how well I ‘manage’ my disease. I was asked to consider this when I was visiting a neuropsychologist – I needed to explain and consider
- The amount of time in a month that I take visiting doctors, nurses and other healthcare professionals
- The adaptations that I put in place to ensure that I can live even with my physical disabilities
- Dealing with medications
- Time explaining to people about my illness or trying to hide my illness from others
Now, I have been diagnosed for quite a number of years now, and I have gotten to a point in my life where some of these things are not necessarily at the forefront of my mind all of the time. I think that a number of them happen autonomously, whilst once upon a time (when I was first diagnosed), they would be at the front of my mind at all times of the day, every day.
That being said, that does not mean that having MS is not an emotionally stressful disease. I have been thinking about the challenges that it presents on top of managing the physical symptoms, and it can be difficult to manage the appointments and medications – it sometimes feels like I have another life/another job that I don’t share with anyone.
One of the problems with MS is that stress (especially emotional stress), can cause flare ups and full on relapses. I think I struggle with the fact that this is a bit of a conundrum – to brings quite a lot of stress into my life, and also responds really badly to stress. In fact, this is why I went to see a neuro-psychologist. I wanted to try and feel as though I had some control back over my life and to deal with that stress and anxiety in a more positive way.
What stresses are caused by MS?
I have found that there are so many different stresses caused by MS – these are the ones that I think I suffer with the most (what about you??)
- Trying to organise and plan around a million doctors appointments and fit them in around work (thank god my work are understanding)
- Concerns with employment – what happens in the future???
- Spontaneous nature of MS – it can change from day to day and completely ruin your plans
- New symptoms just appearing (some of which may go away and some which may stay forever)
- Needing to rely on others and feeling completely helpless and useless
- Concerns about money, including life insurance and health insurance (although I have had some success in this area thanks to an amazing expert who guided me through options for this)
- Paying for medicine (and struggling to afford things – the cost of all of the additional things you need such as Biotin, Vitamin D, liners for urinary issues… it all adds up
- Needing to cancel with friends and family – losing friends!!
- Struggling to look after sick husband (with cold/flu) whilst feeling really poorly
- Change of balance in relationship with husband (taking on more of a carer role)
How does stress impact on MS?
One of the things about stress is that it heightens the immune system – and I do not need to tell you that this is bad for someone with MS. If there is an immune response triggered by stress, this can cause anything from a pseudo flare up to a full blown relapse. It may even worsen some of the existing symptoms that you have. I know that for me, when I get too stressed all hell breaks loose with a number of my symptoms including pain, fatigue, some of my sensory feelings in my face and my legs, weakness and my bladder is worse as well. Although my MRI has been clinically stable for around 4 years now (maybe slightly longer), I know that I have had changes in my symptoms which are due to flare ups each year, and some of these can be mapped to stress.
Multiple studies have been done on people with MS and stress, and they have all concluded that stress has negative impacts in MS, increasing the number of flare ups in patients. Apparently being under constant stress does not increase the risk of relapse so much as the number of stressful events. Interestingly, those people who have better support networks reduce the likelihood of having relapses even in the presence of stress.
Does leading a stressful life increase the risk of getting MS?
Having read a little about the impact of stress on MS (and also thinking about the likelihood of relapses from increased stress), I was wondering if having a stressful life increased your likelihood of getting MS in the first place. I don’t mean stress like being in a traffic jam or being picked on at school… I mean events such as a sibling or parent dying, or having an eating disorder. I have been doing a fair amount of reading to work out whether research has indicated whether this is the case, or it is contrary to that. In fact, I am still none the wiser. The numerous studies that are out there cannot conclude unequivocally that stress is a contributing factor to the development of MS. What can be said is that it is a factor in the exacerbation of the disease at the onset (and this is very different…)
Mindfulness and Wellbeing
I used to go about life almost revelling in the stress – I think I was one of those people that loved living in the fast lane. Well NO MORE. I don’t think I realised what a negative effect it was having on my body.
Equally if you asked me about mindfulness and wellbeing, yoga and meditation, I would have laughed at you. Now on the other hand, they are a massive part of my life. There is a lot of research coming out to indicate that these techniques – including having a positive attitude (being a glass half full kinda person) have really powerful effects on the ability of people with MS to improve their lives and reduce the impact of stress.
Apparently (and I am no expert in this matter – the way that we live our lives and how we respond to daily stresses has a massive impact on how our disease progresses. When I was first diagnosed, a lady I know with MS told me that if you cannot change the outcome of something, change your attitude towards it. I still live by that now… and I will repeat it over and over one this site (you will get sick of hearing it).
Apparently whilst negative stresses and events have the ability to increase lesion load and cause flare ups, positive ones have the opposite effect and can reduce progression. This means that although we cannot change the fact that we have MS, we can change our outlook on the disease, which means we can change the course of our progression if we are positive about our outlook.
Stress limiting for a better life
- Accept that you have MS – it is here to stay
- Stay active and get out there in the fresh air
- Conserve your energy and make sure you rest
- Ask for help and do not feel defeated when you do
- Build a support network
- Stay social (don’t be a recluse) – you will feel better once you are out
- Find time to have some fun – it is not all doom and gloom
- Find new hobbies and do not focus on what you cannot do any more (we have all had to give up something we loved doing – get out there and start something new – see if as an opportunity to meet new people and learn a new thing)
- Set some realistic goals – chunk the bigger goals into small manageable one