Life comes with limits...I am pretty sure that I read that somewhere once and I never really understood it until now. I mean life should be limitless, the possibilities are endless and if there were so many limits then the phrase "you only live once" really loses its meaning. The trouble is that whilst I still believe that some peoples lives are limitless, mine is not. The question is......is this a really bad thing? My answer is no and here is why.
I truly believe that to live the life that you want to, you will make some limits for yourself. These may be financial limitations so you can save up for a house, or they could be physical limitations so you can train for a marathon..... For me, my limitations enable me to live as close to the life I wanted as I can get. I have accepted that there are many things that I will never be able to do; that was not a tough thing to get through, but I am on a new path now and that has opened up new doors for me. Equally, understanding my own limitations has made me more aware of how those supporting a loved one with lupus or any chronic illness, can do so through understanding all our limitations.
So here are some of my limitations and how you can help others to come to terms with them.
Physical barriers....
To be honest there are so many physical barriers that if I were to name them all here, you probably would never want to visit this blog again. Some of the things I now find physically hard to do really upset me. For example my beloved swimming now feels like trying to swim through mud - even though I do still do it - it is no easy feat. here are a few that I am sure will resonate with others.
Getting in and out of the shower/bath
Yep I know it sounds utterly ridiculous, but I really struggle to stand up in the shower in the mornings, let alone get in and out. The act of bathing alone is exhausting and I am having to do all this with stiff and sore joints, a pounding head and the worst brain fog imaginable. Now I know many people will simply tell me to have my bath in the evenings.....well I have tried this, but I cannot go to work without a shower for three reasons. I get the dreaded night sweats, so that wouldn't be pleasant. I am so sore in the mornings that the shower really helps me to wake up and limber up. Finally why shouldn't I have one in the morning just like everyone else.
Whether you live with someone or not, there are many things you can do to help you within the bathroom. There are safety rails you can use, anti slip matts which I really do need to get. If you live with someone with lupus and you are comfortable too, a simple offer of help in and out of the bath/shower goes a long way. Even if they don't take you up on the offer, it will help with the mental strength that we all need so desperately.
The climate is a massive annoyance
I always have to be warm and in Britain that is not the easiest of things. I suffer from severe Raynauds as well as difficulties with my hypothalamas; quite literally I am never, ever warm. Sometimes it is so bad that I simply cannot cope with the feeling. It is so very difficult to describe, but it is like my bones are cold and I am freezing on the inside, even when I am warm to the touch. Now you may not realise, but this is one of my biggest limitations as everything is heightened when I am cold - the pain, the fatigue, the headaches, the nausea....all worse when I am cold. Equally it will take me hours to warm up and some nights I won't warm up at all. So within my home I have to make sure that even in the summer I have hot water bottles, the heating may have to go on, I may wear gloves, have blankets on every sofa. it is actually very difficult to manage.
There are several other things to note if you are helping someone with lupus. I really struggle to hold freezing cold glasses, ice creams....anything that is very cold. It sets the raynauds off and then it will take hours to go. Keeping glasses at room temperature and not offering ice is very handy - even straws are a great alternative. The environmental side effects, such as being in a cold room, not having access to blankets or similar can really make for a painful evening.
Days out are particularly cruel
One of my biggest problems and one that I know that most of us face is doing too much on a day out or a holiday. These are the hardest times to manage our symptoms. For me it is because I love nothing more than to explore. Last year I went to Austria for 2 weeks and I must have walked nearly a hundred miles, coming home more exhausted than I was before I went. Don't get me wrong, I LIVED and I loved every second of it, but I had forgotten my limitations and this resulted in many nasty issues when I got home.
Yesterday I was out for hours enjoying Manchester's record store day. Now a healthy person would not have to plan the day out with suitable resting areas in between, but me, I had to have every hour planned to a tee so that I could enjoy it to the fullest. So, this is how it is if you come on a day out with me. I will need you to understand that I will plan the day as off the cuff trips can cause multiple fog and physical issues. I will need seats close by, whether we go to a cafe, a park or a music gig, I will need access to a seat at some point. Finally, if you are planning a hike with me, or even just walking around town, I will be slower than you. I am sorry for this, but the more energy I use then the harder my day tomorrow will be.
Other physical barriers that I haven't got around to, but I will do in the future include;
- Help with transport - especially on hospital days.
- The pain limits my evenings out
- I will need to have at LEAST one day of rest a week
- If I don't get adequate rest I will not function at all the next day
- Stairs are my worst enemy
- I can no longer lift very much at all - sometimes this even includes a cup of tea
- I need special bedding now to sleep comfortably - which is expensive
- The side effects from the tablets means that I get very nauseated and need to be within close proximity to a toilet - sorry but it's true.
- The brain fog makes me panic in crowds and limits where I go sometimes
- As I have to organize every single aspect of my day I am mentally limited by the disease itself.
The main thing to remember is never to let yourself be defined by your physical limitations. I am not the girl who can't go out at night....I am the girl that chooses to battle through tomorrow!
