The Adventures of Anna Jones – A Day Out!

Norwich. February 2011.

Yesterday’s trip to Norwich has highlighted how incredibly far I’ve come since that first day out with my friends. For one, there was no wheelchair! If the tyres hadn’t been flat (*rolls eyes*) I would have taken it and the payback would have been lessened considerably. But still, no wheelchair and I still managed it! Three cheers for my legs! For those of you who know the city, we parked on Bethel Street, cut behind the police station and walked to Lower Gate Lane for lunch. 

• Snacks – Vital as a lack of sugar or food does not help any dips in energy levels.
• Drinks in both bottle and carton form as I am sometimes too weak/unwell to pierce the top with a straw/unscrew a bottle top. Having options gives me more chance of succeeding!
• Hat
• Scarf
• Gloves and mittens to go over the top! (My heart seems to think it doesn’t need to pump blood as far as my extremities. Silly heart.)
• Blanket? For my legs if I’m being wheeled around. 
• Ear plugs/defenders so my friend can listen to music in the car if she wants to. I can’t seem to cope with having music on and coping with the constant moving scenery when travelling. 
• Medical ID bracelet incase I get lost 😉 
• Blue Badge for superior parking spaces and those wider bays that are a godsend for those like me. 
• Painkillers
• Rescue Remedy
• Relaxation exercises/apps – Quick Tip! Do them when you nip to the loo if you have to! Grab any free minute, ie. while your friend puts something in the boot while you wait in the car

All this can make for a very heavy handbag! If I have the wheelchair it doesn’t matter. My siblings have learnt that I’ll shuffle a bit faster if I don’t have anything to carry. This pleases them as they don’t have to hang around waiting for me to catch up all the time. Hence why they now tend to carry my bag/s for me!

Now I’m sorry if this is gross but I am having a huge problem at the moment with…sweating. My clothes get wet! Seriously. I can’t put my finger on what the trigger might be: the material my clothes are made of, feeling anxious or nervous, deodorant…

So anyway. It means I have to be even more careful when deciding what to wear. Layers have been key. If I get too hot, which can happen in a matter of second, it can be a bit of disaster. If I get too cold it will stay with me all day and into the night, making sleep even harder than usual. So layers! And now I have to be careful to pick colours of patterns that might disguise any…sweat patches. Eww. Sorry! 

In the past my friends have swapped numbers with my mum so that they can get in touch with each other if needed. My friends wouldn’t necessarily know what to do if I suddenly crashed and if I suddenly lost the ability to speak while crashing, then they would at least be able to call for help or advice. My friends are lovely but they don’t see the ins and outs and the harsh reality or this illness like my family do. 

Days Out are trickier than visiting friends’ houses because there is no ‘base camp’ if you like. Days out that involve travelling longer than 15/20 minutes are a huge undertaking. You’ll probably know by now that there is always payback to some degree. Today and tomorrow will be a huge juxtaposition to yesterday. It isn’t fair but life isn’t fair. Truly accepting my new life means accepting all parts of it, payback included. It is hard to do that but I am trying. I try to concentrate on the event that led to the payback and 9 times out of 10 I’m reminded that the suffering was worth it! 

If laughter is the best medicine, yesterday has probably cured me!

And a lot comes down to having the confidence and conviction to speak up. Luckily I’ve always been stubborn so if I’m confident even to say that a certain destination is too far for me to reach, it’s unlikely whoever I’m with will persuade me otherwise. What’s frustrating when this happens is that some people brush it off as me being pessimistic about my own abilities. “How will you know until you try?!” Believe it or not, three years of this illness has taught me more about my own limitations than it has you! With some people it becomes easier to keep quiet and struggle on but the consequences have taught me/are teaching me that it’s rarely worth it just to keep others happy. 

This day out has shown me that I am in a much better place than I once was. It’s given me hope that I’ll be well enough to have more days out. I’m thinking once every six months? And then maybe once every three months. Then every other month… Until eventually, one day, I can do it without the planning and the worry that my body won’t be strong enough. One day I want to go for days out EVERYDAY! Or at least have the option to. That’s the dream.