MS: Under Attack

For the 5th time in just over 2 years, I am having an 'MS attack'. I have what's referred to as 'highly active' relapsing remitting multiple sclerosis. It is not ideal in terms of potential for disease progression, but this blog is about the relapse itself - being 'under attack'.

MS is different for each person who has it, and in my experience, each attack is at least somewhat unique. My MS likes to attack the same spot much of the time, so my symptoms can be repeats from prior attacks - but always with an added surprise. Sometimes the new symptom or sensation is a new pain, or numbness of a new body part, or being exhausted at a new time slot. I'm 3.5 weeks into this relapse (at the time of writing this) and it is affecting my arms, hands, lower legs, and feet. I'm experiencing a lot of sensory issues like electric currents, numbness, heaviness, as well as some motor related weakness and clumsiness.

Here's what I'm doing in terms of experiencing and coping with this attack.

Walking Aids
For those of us who have MS, walking aids are often a tipping point or a cue. Do I need to use a walking aid? To walk at all? To walk safely? To walk far? During this relapse, I need to use walking aids to walk safely and to walk far. My walking aid of choice at this point are trekking poles. I have two sets, one at my front door and one in the trunk of the car. I don't need them to walk around the house as there are plenty of surfaces to steady myself on. One thing about walking aids that will be obvious to those who used them and less so to others, is it makes it hard to carry things, or to hold someone's hand. These are things that seem small but trust me they are not. The amount of planning that went into me walking to the community mailbox to retrieve the mail was extensive, considering what a routine task it typically is.

Driving and Errands
Short section - not doing either of those.

Family
As my daughter wisely pointed out, being home more often during an attack does mean more time with family. However, being around others during an attack can take a toll on my energy level, feeling like I need to be 'on' or do for others.  It took time for me, but my family has learned to focus on quality rather than quantity. I like to think that despite having so many attacks in a short period of time, that I have been able to maintain a solid level of quality in the time I do spend as a mom, wife, and daughter etc. That said, the thing I am most looking forward to doing post-attack is being able to 'mom' more fully.

Working
I've had attacks when I have been unable to work due to severe vertigo or a lack of mobility in my hand. Thankfully, I have been working during this relapse. It has been great as it keeps me occupied and contributing financially to our household. As a Career Coach, I help others at a time of career transition, when people may feel uncertain and scared. It is very rewarding for me to support these clients with skills and tools to ease their transition. Working helps me stay true to one of the mantras I have adopted since being diagnosed with MS - try to focus on what I can do, rather than what I can't do.

Socializing
Need something from someone and you will quickly understand that socializing is not just about being social. If I was the type to put friendships on hold during attacks, I would have spent 10 months of the past 2.5 years removed from some of the best people I know. I have certainly not been my typical social self, and over the past few weeks, many friends I have spoken to have heard or seen my tears, but that's ok, that's real, that's life with chronic illness. And as some of you are likely thinking, there have been many times that I have been there for my friends when they have been down - that's what friends are for. I have been prioritizing socializing that I can do with my husband and kids - with shared friends, so they can have some normalcy and lightness during this relapse, from which they are 'under attack' too. Socializing during this exacerbation has been a good distraction, a form of support and an investment - not much can come from relationships that you don't put anything into. I love my friends, I need my friends, giving and receiving friendship is important to me.

Self-Care
During this relapse, my priority in terms of self-care was to let my neurologist know what was happening. After a few MRIs and an examination from the neurologist, he is in the process of switching my medication (Disease Modifying Therapy - DMT). I am aware of the risks and limitations of many of these medications, but there is a potential upside, and I am sticking with being on a DMT in hopes that one of them will reduce the frequency of attacks.

‍
Since being diagnosed in 2018, I have been committed to regular exercise and healthier eating - and even more so during this attack. I am also very protective of resting twice a day and getting a solid night's sleep - my MS fatigue requires it. During this relapse, sleeping soundly at night has been a challenge because of the sensory symptoms. The most important aspect of self-care during this attack has been allowing myself to be where I am. I have been feeling compromised and vulnerable. This relapse has been very difficult in terms of the symptoms, where it leaves me regarding treatment options, and the potential for disease progression. I am under attack. But I'm not going down so easily. I can already feel signs of being more like my usual self and I'm looking forward to potentially feeling even better in a few weeks.  I have my own spin on a helpful expression I have heard others in this community say, "I have MS, but MS doesn't have all of me".

--

Hey there👋 We’re Shift.ms, the community for people with multiple sclerosis. Founded by MSers, for MSers, we exist to give you social and emotional support, and to inspire you to take charge of your health as soon as possible after diagnosis. It's independent and free. Click here to join our community.