I am exhausted. I arrived back home from a few days away last week; last Friday to be exact.
This is the last day of fibromyalgia awareness week and as always I had full intentions of making a post…. Maybe even posts! Plural!! Ha! How silly were my “high” expectations? Naturally, this week I have been stuck in a haze of brain fog that is refusing to budge, an extreme lack of motivation and, quite honestly, an inability to be able to stay awake during “normal people” hours.
You would think I would be used to it by now, but alas.
Anyway, I thought I would try to add my voice to part of the discussion and do my part of raising some sort of awareness of what life is like with a chronic condition – while it is technically still Fibromyalgia Awareness Week 2021.
As I have already said I am not long back from a few days away so I thought why not share a little about what it was like to prepare to go away. Spoiler: it is not so easy.
Going away with a chronic condition involves a lot of organisation. It can involve a lot of lists, tears, anxiety and a whole lot of “What if?” questions – “What if I forget my medication?” “What if I have a flare up?” “What if I get lost?” “What if I forget my name?” It’s very frustrating. It often means overpacking and then facing the problem of the bags being too heavy to carry or you having too much pain to carry it all.
Now, I was lucky enough to have two main advantages on going away:
- My handsome chap was joining me. My dad was going to be with us too. I would have the “muscle” to carry the heavy stuff, I would have the help if I got stuck. I would have someone to cling onto and use as a crutch if I needed.
- Our time away was actually visiting my sister and her boyfriend.. My sister obviously knows me, she knows how my health impacts my life. She knows the self care and self management techniques I use. She knows the signs that I am suffering. She has a lot of the things that can help self manage actually stored up, ready to use when needed. Like I said, major advantage.
You would think this would make the packing and preparation of going away much easier. Truthfully, in many ways it did… However it was still difficult,
A huge challenge in organising anything is fibro/brain fog. I have no idea how to describe what the experience is like that could accurately describe the sensation. The only way I can think of is actual weather phenomena of it being foggy. I am not talking about a light mist here, I am meaning thick fog. The type often depicted on TV and films? The type that you can hardly see anything. The type that you have to fully concentrate on your surroundings. The type that you find yourself testing to see if screwing your eyes up would make any kind of change to your vision, when you are willing beams of light to come from your eyes to illuminate everything so you can see, You know when you see a faint flash of colour, or maybe an outline in front of you? Is that a building? Is it part of a tree? Is it another human just trying to wade themselves through this thick, difficult, confusing situation unscathed? Well this can happen at any time, doing anything with a chronic condition. Maybe not literally, but definitely figuratively. That fog is in your head. That faint outline or flash of colour you think you can see? – those are your thoughts, things you need to remember, the things you have to do. You know when you walk into a room and you forget why you have gone into that room? Ever put something down and forgot instantly where it was? Or found yourself holding something, knowing you were going to do something but have no idea what? Have you had conversations with somebody and your thought instantly flies out your head, you have no idea what you were saying? Have you ever forgotten what you were saying mid word? Have you had to literally muddle through the fog just to find the word you mean? Or plucked out the complete wrong word in an attempt to cover up that this has happened? It is so hard. So hard.
Is it any wonder that planning, well, anything really can be stressful through such things. When you are dragging yourself through murky, resistant territory? Vague shapes and colours come into view only to then be fully engulfed. If you were to do an online search about brain fog it will list symptoms like:
- Confusion
- Easily distracted
- Losing train of thought
- Forgetfulness
- Word finding difficulty
- Trouble organising thoughts/ activities
- Lack of focus and/or mental clarity
If you look at it in an extreme fog like situation I think, hopefully, you could see the challenges being faced. You are scared and fighting your way through this thick, unclear, cloud just hoping you are going the right direction and finding the information you need to be safe, unhurt and hoping you do not forget something really important while dealing with self consciousness if you have to communicate through this time.
Below I am going to list some things that I had to do that helped me in my preparation of going away. Hopefully it helps others, or at least make people aware of what considerations need to happen by myself and/or my loved ones.
- Drs appointment/ medication – I had to make a doctor’s appointment about a week before leaving to order in medication. I had enough medication to go away but I would have to try and remember to make the time to order medication when I was away or I would risk coming home to no medication. My medication is an important part of my self care and management routine. I should also note here, I had a reminder text from the other half that I needed to do this. He also helped me work out when it needed to be done in the first place too. This was just my daily medication… I also wanted to make sure I packed painkillers, antihistamines, ibs relief tablets, making sure I was prepared if my period was to start, making sure I had heat pads, creams I need. Oh and just because all of that wasn’t enough, I had an ear infection so I needed that treatment too.
- Packing – I wrote a list. I had it checked and double checked by myself and my boyfriend. I swear he must feel like Santa sometimes checking the list, and then checking it twice! I needed to have an outfit for everyday and I had to take extras. Having extra clothes in my case is essential. I have IBS, I might need a change of clothes, I might need to have clothes that will be looser on a day either because of bloating or pain. I need clothes that I can have layers so that I can add or take away as needed… I have trouble regulating temperature therefore I can become way too cold or way too hot, fast.
- Travelling – When you are going away, mode of transport is an important consideration. For myself we would be driving. Having the car is always handy for going away because you can just pack things in the boot and it is good for having those extra shoes, extra changes of clothes etc. Last time we visited my sister I did all the driving and it was killer! Driving is difficult. It is hard on my body physically and mentally. It hurts, I get stiff, some movements cause extra pain, clothes hurt, it gets too warm. I get really worried about getting lost, I can’t count roundabout slip roads properly. I get tired fast. All this is hard enough for local drives… but this drive? It is a 200 mile journey to my sister’s. This time I got the other half on the car insurance for the week so that we could share the driving. This was a massive help. The reality of us sharing the driving responsibilities actually turned into him doing MOST of the driving. Actually I ended up just driving to pick him up and then on the way home I just had to drive from his back to mine. He did the rest of the driving on our travelling and including all the driving in and around Elgin for our activities. This also included running (yes, physically running on some occasions) to get the car to get as close to me as possible as I was struggling getting back to it.
- Self care – have a wee pack of painkillers, antibacterial hand wash, wipes/ tissues in your bag. A bottle of water and something small to eat is always handy to have in your handbag too. I had a bag of snacks for our travels.
Incidentally, these examples are all I can remember right now.
All I would add is, try and be kind to yourself. Yes, it is stressful and yes you would rather be prepared for everything, but it will work out. If you can remember the main things (mainly medication I would say) then anything else really can be bought when you are at your destination.
Be kind to yourself and be kind to each other. Everybody is just trying to feel their way through life, fighting battles unknown. They might even be stuck in their own journey through the murkiness of that fog!