Low – The Darker Days with MS

When I talk about MS and it’s impact I try to be positive in my response. It’s important to be. It feels good to tell a positive story around something that is, well, hard work sometimes. Nicer to read something positive about it as well, I expect! It is unrealistic, though, to only talk about MS in such terms. Like all progressive illnesses there are days when things are simply not so good. When the legs are not quite doing what they should or when the connection between mind and mouth is a bit broken. The days when, despite a full night’s sleep, the fatigue is just too much or the senses are just completely overpowered. Most difficult to explain there are the days that are just dark. When the mood is bleak and the reason why is just not clear. The low days.

People seldom talk about such days. They don’t fit with the positive narrative that society seems to expect about everything, even illness. But they are important to talk about. I will give it a shot.

Some Background

Unfortunately the fact is that depression is actually another stealthy symptom of MS, whether caused through damage to the areas of the brain that influence emotional expression or by dealing with the unpredictable impact that MS can have. Around 50% of MS patients deal with depression, no small number. So it’s not unusual. Oddly comforting to know that. Just another dark island in the sea of MS. Makes it easier to talk about. There are also many forms of depression, ranging from relatively mild to full on clinical depression. The impact of the latter can bring a person to a standstill. Rather like MS.

Such variables make it so important to read, understand, listen to experts and, most importantly, filter out the noise. Last week someone said on one of the the Social Media channels that psychosis is an MS symptom. No perspective, just ‘is’. The on-line discussion that followed was earnest and uneducated. Somewhere hidden in the chat there was some context from the article that that the statement was based on. The actual percentage difference between the ‘healthy’ population and those with MS who suffered from psychosis was miniscule. Symptomatic of the modern world where it is so easy to read something that someone said and take it as the truth. Better to ignore people who are thinking aloud. Unfortunately they do so with one-thousand followers who happily join in.

And, let’s face it, I read it!

Being Low – My Perspective

What I am writing here is not based on something that someone said on Facebook or Twitter, though. I also know that I do not have anything as serious as clinical depression, absolutely not and an insult to those who really do have to cope with this. I see mine as something more like some sort of dark rollercoaster. The course of a rollercoaster cannot be changed and I have to accept and deal with the lows that come after the height of the climb and the excitement, the exhilaration of the dive.

I have been lucky. Help was available to me at an early stage. Expert help from a very friendly, very approachable psychologist. At our first meeting I was quite cynical to be honest. Made a daft joke about Freudian Slips in the first session, so daft I don’t remember it. I actually don’t even know what a Freudian Slip is! Should look it up, Google it or something…. In spite of myself I realised the importance of honesty. That simple act, opening my mental doors, gave me the foundation to deal with being low at an early stage. To know that what I was going through is actually very normal is reassuring. It doesn’t make it nicer but it is reassuring. Low is normal.

The fact is that I can go from the absolute heights to real lows at sometimes dizzying speed. and I just don’t know why. Like all things around MS it can feel like there is a lack of control. It can happen at the oddest time as well. During a moment of real elation, such as record speed on the bike or after a really nice time with friends, there can be sudden feeling in the pit of my stomach.

And suddenly, just like that, I feel low. Most of the time, I really don’t know why.

Dealing With the Low Days

This is the difficult part. How do you cope with something so unpredictable, as with everything around MS? Discussions with my psychologist gave me pointers, a basis. But my psychologist cannot be available twenty-four hours a day. So it is down to me to build on the basis she has given me and develop some personal coping mechanisms.

The obvious one is distraction, force the mind out of its dark hole and get it back in to the light. A long bike ride helps for example, clears the mind, makes me realise that the world is happily bigger than just my small part of it. Not everything in my response is built around cycling, though! I like company, just talking nonsense, not heavy chats. Music, films, food, any kind of cr*p. Literally anything. Actually, if the person I am talking to needs to offload and it is to me, that is fine. Whatever. It is a good feeling to help. Pulling another person out of their black hole helps me keep mine in check.

Variety also boosts my resistance. A predictable week can be hard, although conversely my need to prepare carefully for certain work engagements means that predictability is hard to avoid. Within that it is possible to build in something different. A concert, an evening out, a workshop at the office, just doing something different.

Through such actions the dark clouds are dispersed, at least for a while. They will regroup though. That dark rollercoaster is a pretty solid structure and the dive following the climb is inevitable.

Riding the Rollercoaster

I would love to say that I have a foolproof method to ride that dark rollercoaster. But I I don’t. The coping mechanisms I have will not stop the low days, they just alleviate the issues. Small points of light, helping me find a way forward. In the end, all I can do is ride the rollercoaster. I know that the darkest days will be followed by the brightest light. The challenge is remembering that the light will come. It is inevitable, as inevitable as the darkness.

In the end, it comes down to sitting back and experiencing the ride. Which sounds passive, defeatist, perhaps. But I have my responses. These help me start to climb toward the light. This can be quick or laborious but the light can be dazzling, joyfully happy. I know my smile is big on these days and I have learnt to bathe in the light, feel the joy. The darkness will come, that is inevitable. But while the light is there, why not just enjoy it? It is never that dark, in any case.

When the dark is there? Try to face it down. That’s all that can be done. It works as well.