There are so many different ways in which chronic migraine impacts my life. Some of the consequences of living with migraine I try to control, others are completely out of my control. Some affect me intermittently and some I experience daily. These are consequences that I have had to learn to live with and although it can be hard at times, I nonetheless try to live life to the full.
However, there is one symptom that can really stop me in my tracks. Chronic fatigue is something that can be very hard to manage.
Having an acute migraine attack really takes a toll on the human body. The symptoms I experience during an acute attack include pain, nausea, vomiting and photophobia can hit me like a bus and sometimes leave my body feeling tired and fatigued for days after. There are times when I need to stay in bed for up to three days after an attack, just to try and get over the effects and to feel ‘normal’ again.
Couple this with daily chronic headaches and you might understand why I am tired ALL the time. Daily headaches and pain leave me exhausted on an almost daily basis and this can have a huge impact on my life and energy levels. My family used to laugh at me and say that I could sleep literally anywhere, and that’s true. I tend to be tired a lot of the time so I always try to take advantage of an opportunity to get a catnap in. Believe me, my days of burning the midnight oil are well and truly over.
Juggling family life and work with fatigue
I think in the past I used to be able to manage my fatigue better as I wasn’t so busy. But as my work and home life got busier, my fatigue increased to the point that there are now days when all I can do is stay in bed and rest. As you can imagine, this isn’t always possible with a full-time job and three small children to care for, but when I can (and when I have no other choice) I have no option but to rest.
There are days that I simply can’t get out of bed and these are very tough, as it is so difficult to hear the hustle and bustle from the kids downstairs and not be a part of it. Thankfully though, the days that I have to spend the entire day in bed are rare.
Still, fatigue plays a huge part in my life. I work full time, so on the days that I am fatigued I end up utilising all my energy just to get through the working day. By the time I return home I’m often exhausted and too tired for other activities. This in turn has had a negative effect on my family life, with tasks such as homework, dinner and taking the children to clubs etc. taking a backseat.
I have a GREAT husband, but even as great as he is, he can’t do everything. So I try to do my bit. By 9 p.m., once the kids are tucked up in bed, I am only fit for bed myself – and most nights by 9 p.m. that is where you will find me. My busy job and family already leave me tired, but add chronic migraines to this and I am exhausted.
Far-reaching and unpredictable consequences
It’s no surprise that my social life has also been affected as I am usually too tired to see friends after a busy day at work or with the children. I think my friends must be so tired of hearing me say that I can’t make a night out or attend a dinner because I am just “too tired”. In trying to reserve my energy levels and prioritise what’s most important to me, I have definitely neglected some aspects of my life. And that’s tough because they are usually parts of my life that I really like and enjoy.
This is one of the biggest difficulties of living with a chronic condition. You don’t always get to do what you like and when you would like to do it. I know that this is difficult for other people to understand. People who are lucky enough not to live with chronic illness often don’t fully understand the complexities of living with a condition like migraine.
The symptoms don’t just affect you when you have an attack. They can affect your daily routine in a range of ways. People can be very kind and understanding to me when I have an attack, but they often don’t understand that the symptoms and effects don’t always go away when the acute attack does.
Mitigating the knock-on effect
I suppose that, for me, the biggest effects of living with chronic migraine would be pain and fatigue. These two symptoms can vary in severity and intensity from day-to-day, but always tend to be there. So, trying to ensure that I get a good night’s sleep is very important. I know that if I have an event or an occasion coming up, I will prepare by sleeping as much as possible ahead of time, to try ensure that I can be fit and ready on the day.
I also try to talk to people and let them know what I am going through. As I have said previously, people don’t always understand the complexities of what it is like living with chronic illness. So I try to explain it so that the people closest to me have a better understanding.
Because fatigue is a migraine symptom that won’t be going anywhere soon, I need to change as my life adapts. My life now is very different from what it was twenty years ago. There are many more demands on my time, so I have had to make changes to ensure that I am there for my family, whilst also caring got myself.
One big change that I have made is to accept help when offered. For far too long I tried to portray to the world that I could do it all. Have the career, the family and the social life, all whilst managing a chronic condition. I now know that this isn’t possible and that I need help. Luckily I have a great family and a few good friends to rely on when I need a break.
I’ve also learned to cut back on the amount of things I was trying to achieve in one day. I don’t always help out with the Parent Teacher Association meetings at the kids’ school, or make freshly baked cakes for the village fare, but that’s O.K. I was setting unrealistic expectations for myself and the more pressure I put on, the more tired I got. It’s only when I took a step back and realised what was actually important that I started to feel better.
It’s not always possible and I certainly don’t always get it right, but I do try and I suppose that’s all I can do. I love my life and I don’t want to give any part of it up as a result of migraine. Ensuring I am there for those who matter most and care for me most is the priority.
NPS-IE-NP-00084 September 2020