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| A rare day out in the sun with Boo, Jacob and their cousin Charlie |
As we know the seasons change every year and if you are lucky you can enjoy them and appreciate the beauty that each one brings. This is also true for people who suffer with a photosensitive condition like HUVs. The only difference is that the majority of the time you watch the seasons come and go through glass.
There are many conditions that are effected by sunlight and UV but some can cause more serious reactions than others.
If careful you are able to join friends and family outside, just not on the beach, on a very sunny day, near water or in the snow. It takes planning and the occasional strange outfit…..
Angiodeoma can be very serious and if sunlight increases the chance of a reaction then it is imperative that precautions are made before leaving home. Below is the check list I have
- Factor 50 sunscreen, even when it is raining
- Hat
- The biggest sunglasses available on the market
- Clothes that cover your skin
- That the destination has shade
- Medication
- Someone with you
Photosensitivity can be really frustrating, especially when you are out and enjoying yourself and WHAM! a reaction starts. But it is not the end of the world and if you follow advice and are sensible you can get out and about.
There is an excellent website that covers all sorts of photosensitive conditions and advice. This includes information about UV lighting which I am affected by. The website is sun1.awardspace.com/Diagnosis/diagnosis.htm
In my last post I mentioned about preparing to return to work, if you are photosensitive or effected by UV lighting I would suggest that you get it recorded in your return to work plan. This is to ensure that you are not seated by a window or directly under UV strip lighting.
So back to my title: A Room with a View.
At the back of my home is a window wall that looks across houses to the South Downs on the South coast of the UK
I watch people come and go, busy in their daily activities, not realising they are missing the beauty which surrounds them. I am very fortunate that out of a debilitating diagnosis, which stops me from joining the people outside, I have time to fully appreciate what has been in front of my nose but never been seen. This year I have seen the Downs swathed in thick snow with the local children sledging down the hills on the other side of the valley, to my own back garden full of roses and herbs that are beautiful and fragrant. Don’t get me wrong, I miss the outdoors and our long family walks but I have learned that it is important to enjoy what you have. I am highly photosensitive and my condition is extremely effected by sunlight but I choose the important occasions and use the “spoons” (remember them?) I have been saving to spend quality time outside with my friends and family
My Personal Update
Well today heralds the end of the summer term for my children so from tomorrow onwards the house will be full of “I’m bored” or “can I have”. It is at this time that the above post really kicks in as I cannot take them anywhere. I am, though, extremely fortunate to have people around me who recognise this and offer to help.
I have had several medical appointments, some good, some not so good. More tests, different meds and a whole bucket of frustration. But as I have mentioned in my pervious posts I need to trust my physicians and place my care in their hands. My goal remains the same and at this point I will continue to work towards it.
We put my car, our beloved Mini Cooper, on the market as I am unable to drive. This surprisingly had a huge emotional impact on us and Boo was very upset I think she saw it as “Mummy’s last stand”. When fighting your corner the whole time you forget how certain things effect those around you.
Mark and I are still working to accept what will be and thankfully we are extremely strong together. I couldn’t ask for a better husband, partner or friend.
I have a great new set of wheels that are self propelling, so now I have freedom even when sitting down, it’s great. For those who know how I drive, you should see me in the chair….I’m much worse! My friend Jax is desperate to “Pimp my Wheels”, should I give her full freedom?
So that’s where I am at the moment. Somewhere in the middle……sitting in my back room watching the clouds race across the blue sky towards the sea, the dog walkers on the downs and the seagulls bobbing up and down on the airstreams. Let’s face it….it could be a whole lot worse couldn’t it???????
Until next time
Sarah
