The everyday worries are things like trying to predict a flare-up, or cope with one when it arrives, trying to constantly manage your energy and pain control, and battling your own expectations of yourself. Also, trying not to burden others with what you are going through can make you more anxious.
Then there are your long term fears. I don’t spend all my time thinking about the future and all the what-ifs, it’s not a healthy way to live. There’s a balance to be met of owning your situation and not hiding from it, but also not letting it consume and paralyse you. Living with a chronic illness that has no cure is scary, and of course I have fears about my own life expectancy, fears of the unknown and of how an illness like this may develop. But you have to find a place to put that away and live for the moment, live for the now. Sometimes you have to give yourself permission to have a good cry or moan. But then you have to shake it off, shake off the self-pity and look at the sunrise.
When things are good you have to try and appreciate them because inevitably darker times will come, and when things are dark it’s important to hold on and remain positive, because they won’t stay dark forever.
Here are some examples of the challenges I face as part of my daily routine:
- Deep breaths, expand lungs gently (lung damage from pleurisy and clots)
- Put in eye drops (dry, sore eyes)
- Take pain killers for headache (medication-induced headaches)
- Use cooling stick on forehead (Lupus patients often have permanently raised temperature)
- Apply a heat elixir to ease joint aches/pain/inflammation (joint pain and inflammation)
- Use antiseptic mouthwash to wash out mouth and soothe ulcers (overnight blood build up and dry mouth)
- Use hair removal products on face (steroid treatments can cause excess facial hair)
- Apply high factor sun cream (Lupus makes you light sensitive and can cause face blisters)
- Apply creams for facial pigmentation. Use different blister creams inside nose, on bottom and legs. Massage legs to increase circulation
- I wear a medic alert bracelet at all times so my medical records can be found quickly if I was taken ill or involved in an accident
- In cold weather I suffer from Raynaud’s syndrome (another associated condition that affects blood supply to certain parts of the body) so I have to wear thermal gloves
- I am sensitive to sunlight and can react with facial blisters, rashes and pigmentation problems
- I use special high factor SPF under my makeup and wear a hat. I’m vitamin D deficient so I have to take additional tablets
- As I take a blood thinner, I have to be very careful about knocking myself as I bruise easily
- I suffer from daily dizziness which can escalate depending on what I’m doing, how tired/stressed I am or if I’m having a flare up