For M.E awareness day myself and Ali from All about ME beingamummywithme.blogspot.com thought that for our awareness post we would blog about our weekend meet up a few weeks back. Myself and Ali both suffer from Myalgic Encephalomyelitis and are severley affected. We decided to meet up half way for both of us which is an hours travel for both of us. By documenting our weekend and sharing it from both of our perspectives we wanted to show how even though we both have the same illness and had the same amount of travelling to do how differently we experienced the weekend. And to show how varied the symptoms we get are. This blog post is part of Sally's #may12thblogbomb. You can read plenty more awareness posts on her blog sallyjustme.blogspot.co.uk
This meet up was planned well in advance and actually took a while for us to find a weekend that neither of us had much on the week before or after so that we could rest before the weekend and rest and recover the week after. Also of course as we are both heavily reliant on our families we needed to fit in with them too. Ali, with her husband and daughter and me with my parents. We also made sure we both booked on a refundable deal due to the unpredictable nature of M.E and the chance that one or both of us couldn't make it. We booked to stay in a Premier Inn as it's a chain that both of us have used a few times and know are good. Familiarity and feeling comfortable when you have a chronic illness is really important. I even know by now to take an extension lead to be able to use my heat pad and charge my phone by my bed.
Saturday
I wake up after only 2 and a half hours sleep, feeling completely drained and in desperate need of more sleep but I can't go back off because my stomach is growling for it's breakfast. I didn't manage to sleep until 7am due to a banging headache that wouldn't shift. It does make me panic that I won't be well enough to go. I message Ali to tell her I might not be able to make it until later in the afternoon after a rough night but fingers crossed I'll make it. After breakfast in bed, made by my Mum I try and get a few more hours sleep. It's difficult as my body feels like lead.I wake again at 2pm, still feeling drained and heavy and still like I could use more sleep. I start to panic I won't be able to make it. I lie back down for a bit and let my body come around and adjust. Trying to relax as getting wound up or upset will only make me feel worse. Once I'm able to sit up again my Mum brings me up some lunch. This helps me feel a bit brighter. After that I start to get ready slowly. I clean my face using first aid beauty facial radiance pads (great for when you're not near a sink) put on minimal make up and make sure I don't smell too gross. Luckily I managed a bath the day before. My Mum puts all the things that I need into my bag. I managed to pile some stuff together the day before but as a lot of the things are things I need close by I can't do much prepacking. Mum then helps me to get dressed and helps me downstairs and into the car. I put on my travel bands to help with the nausea.
It's only an hour's journey but today it feels a lot longer and the travelling on top of lack of sleep makes me feel more nauseous but I'm so glad to be on my way. I just try to sit quietly and rest without closing my eyes so I don't feel even more sicky. I feel lucky that I'm actually going. It's only my 3rd time leaving the house in 6 weeks, so I'm feeling thankful.
Luckily once we get there and stop moving I feel less nauseous. I am greeted at reception by the biggest hugs from Ali's daughter on her way back from the park and I am excited to see Ali. I should probably have had a rest first but sometimes you have to strike while the iron is luke warm, plus I can't wait to see Ali. Ali and her family come over to my room for cuddles and chats and I teach Lucia how to make barefoot sandals. We have only met a few times in person but we talk all the time, so it feels like we have known each other much longer. The great thing about having a friend in the same situation means you have an understanding that others can't really comprehend but it's also tragic because you are both suffering. My back hurts though from sitting up without any support.
Feeling ambitious and hungry we head next door to TGI Fridays for dinner. When the two of us are in our wheelchairs we turn a few heads and also cause a bit of panic when getting a table. The restaurant is busy and the music playing is pretty loud. As we wait to be shown to a table I start to think "oh crap this could end badly." Music can often send me into a crash. Only the week before someone playing loud music made me start to feel like I was shutting down. But I try to push through and just hope that it doesn't happen and if it does well then I'm in company that will completely understand and know what to do. Luckily the music isn't too bassy so doesn't have as dramatic an effect on me. However it is hard to focus with so many different stimuli, the music, a lot of people talking, the conversation at our table, the waiters singing the birthday song every 5 minutes. Luckily myself and Ali get seated at a table in a corner so we are sheltered a bit and once our food arrives that pretty much has our full attention.
In my room I take my pain killers, my Mum helps me get ready for bed and I lie with my heat pad on my back. It's funny to think that the weekend has been about seeing Ali and we are in the same place, yet we are both in separate rooms lying on our heatpads, texting eachother like we would at home, miles apart.
It's only half 8, we could both be in the same room watching netflix and eating popcorn but Ali would have to be wheeled to my room and back, whereas it's best she stays put and lets her muscles recover.
You'd think with so little sleep I'd be able to drop off easily but I'm so uncomfortable from nagging muscles, all the activity in the restaurant having an effect and feeling too hot that I don't manage to fall asleep until 4am. I think also it can be difficult adjusting to a new setting, a different layout, different noises (I actually heard someone play Status Quo Rocking all over the world before they left the room. Just that one song!) different smells, especially a different bed seen as our beds are our nests in a way.
Sunday
I think the rush of adrenalin works out well at first. We go down to breakfast, in my chair of course. For the first 10 minutes I'm feeling okay. Even manage to help myself to some breakfast. Ali's daughter makes me laugh by bringing me a straw for my cup of tea, which is great as I'd actually forgot to bring one down. I normally use straws to help me drink, as I often find holding a cup/glass too heavy or my hands shake and wearing tea and burning yourself is not nice. Soon though I begin to feel really heavy and fighting sleep. I find it harder to concentrate on the conversation. My food keeps getting stuck in my throat as I find it hard to swallow and chew from the exhaustion taking over my body. I start to feel overwhelmed and uncomfortable. Feeling really hot and that strange sensation that comes over you before you throw up. I really don't want to leave but I can no longer stay there feeling totally overwhelmed and like my stomach might turn at any moment. Of course though when you are in a wheelchair and unable to propel yourself you can't very well make a quick exit. Just say "excuse me" and walk away. I tell my Mum that I need to go back to my room. At first she doesn't quite understand and says we will when Dad has finished his breakfast. So I have to be a bit more forceful and say "I need to go back now." That lack of Independence and being reliant on others at times can be so frustrating. And communicating that "now" means "now" and not "in a minute," coming across a total diva. It's lucky though that Ali could understand that I wasn't being rude at all. That she knew exactly what I needed to do and could probably see all the signs written clearly on my face and body language. Interpreting them from personal experience.
Luckily Mum takes me back to my room so I can try recover before going home. I want to fall back asleep but as it's 10.30 and we need to check out by 12.00 falling asleep to be woken up suddenly will only make me feel worse. So I take some time to lie down and do some mindfulness and take some medication to stop me feeling as nauseous. However I decide it's probably best if we leave sooner than later so that I can get into my bed and recover properly. It's disappointing though because I could spend an extra hour with Ali and I had said to Lucia that we could finish the sandals we were making. So I feel bad to let her down. I know Ali is having a rest though herself after breakfast. Mum packs up all my things for me and I text Ali to say that we are going to leave soon. Before leaving we obviously go say goodbye to Ali and family and have cuddles. It's clear I'm not the only one who's suffering. It's literally like getting a hangover without the alcohol.
My Nanna is always asking me what side effects I get from my tablets and I always say I get more side effects from life than I do from my tablets.
Because I feel so tired and already nauseous the journey back seems long and I feel really sick. It's hard to stop my mind from wandering to the future and how I will cope with things. Potential longer journeys seem impossible. It's so easy to just feel like giving up because it's left you feeling so horrific. I have to try remember though that it's tiredness talking and I can only live day by day and keep as hopeful as possible. Because even though it's hard and the after effects wipe me out for at least a week, of complete bed rest, I need to focus on the smiles and laughter I've had that weekend. That is what life is about. It's just unfortunate that as a chronically ill person they come with such a price.
Now that you've read about the weekend from my perspective be sure to head over to Ali's blog post1 weekend 2 perspectives to read about the weekend from her perspective, unless of course you have already done so. I hope both posts have been enlightening and have shown a little bit what it's like to live with myalgic encephalomyelitis. Remember this is us on relatively good days, on our worst days neither of us would have been able to leave our beds never mind be able to meet up.
Thank you for reading
Sian
