So today I'm going to look at the small considerations that I have to make on a daily basis, whilst living with a chronic illness.
We all talk about the big things we have to do, like manage with flare ups and medications etc. However, we don't often look at the smaller things that have to be considered daily so that we can survive and live. So I am going to bring some of then to the fore front so that we can all be aware of what life is like for so many of us.
Shoes are a real issue nowadays
I am a woman who loves her shoes! From the highest heels, to wedges and flip flops. I am a shoe junkie. That was until I got sick and I couldn't stand the pain and swelling in my feet every time I put on heels. In fact the last time I did was the works Christmas party and afterwards my feet were swollen for a week.
Trust me this isn't just about finding the right shoes that are comfortable either. This is about finding pairs that will fit over swelling, that will work with changing weather and that will work with whatever outfit I'm wearing.
For example, spring in the UK is the toughest time to get my shoes right. The weather can go from freezing to boiling within an hour and that can set off my Raynauds. The Raynauds brings extra pain so I cannot let my feet get too hot or too cold. Have you ever tried to find shoes that allow for this? It's a nightmare. So every morning I will consider pairs that support my arches, allow for swelling throughout the day, work for hot or cold weather and finally look ok....I am still a girl who loves her fashion.
I carry around a pharmacy and that's not just in medications.
When most of us pack our bags for work or going shopping, we pack only the essentials. Phone, purse, maybe a magazine. Me....well I pack enough stuff to fill a small chemist and here's why.
Starting with painful ankles. Throughout the day my ankles swell up and feel loose in their joints. It is due to this that I will always have a sports support for my ankles and wrists in my bag.
Next I make sure that I have hand sanitizer. I am on immunosuppressant medications and thus likely to pick up everything going. So I carry hand sanitizer and antibacterial wipes at all times.Then there are the two tubes of creams I keep with me. Firstly is deep heat! This is my best friend as I suffer with muscular issues that get worse throughout the day. This works to take the edge off the pain and stiffness. The second cream is one prescribed for my butterfly rash. This lives in my bag incase I am in the office when it is sunny!
Finally there is a small tube of factor 50 sun lotion. The reason is obvious...sunlight causes me to flare up...this helps to stop it a little.
Oh and then there is all my daily medications!
I make a list every day for the next day
I suffer very bad brain fog and struggle to get anything accomplished without a list. Most people can get up, get on with their day never considering what it is they are doing....you just do it...
Me, well I will literally forget to eat lunch, wash my clothes and even my face if I don't remind myself too. Some days it is not as bad and I can just make lists for work. However other days I have left the house forgetting to brush my teeth, turn off the coffee machine and once even lock the front door!
One of the most annoying things I have to do every morning is check through my bags. I have to make sure I know where everything is, from my train pass through to my keys...if I don't do this before I leave I WILL have forgotten something that I need.
I have to get things done at certain times of day
Having the freedom to be sporadic is something I miss greatly. I can no longer live a life without restrictions and most of this comes down to timings.
When I get home from work, instead of switching off like most people do, I have to switch back on. As soon as I walk through the door I have to plan my evening. What do I need to do around the house? What do I want to do? And what can be left for another day?
I have to answer these questions as I have limited amount of energy. Most of the time this means getting in and doing the housework straight away not allowing myself to sit down. After this, if I have energy left, I may take a shower and get changed. However 9 out of 10 times I will simply have to sit down for the rest of the night and hope for enough energy to even eat.
See there are so many small things I have to consider that I used to take for granted and this is just the tip of the iceberg!
