Since being diagnosed with Guillain-Barre Syndrome my life has been challenging to say the least. Before my illness I was working full time and living alone. My house was mortgaged but I was managing pretty well financially. I had spare cash every month to spend on whatever I wanted and I enjoyed having my own space. All that changed though when I was taken into hospital unable to walk. My legs wouldn’t hold my weight and my arms wouldn’t lift up past my chest. I suddenly needed help with simple day to day tasks such as showering, cooking and getting dressed. When I left hospital my Dad had to move into my home with me to help with daily life. At the time, I assumed this arrangement would be short term and I’d soon be back on my feet (literally!). It took a couple of months but I was eventually able to manage enough for my Dad to move out and for him just to visit daily to help with the things I was still struggling with. Now 3 years later there have been some big changes but unfortunately I still rely on my dads help for many things.
The biggest change post GBS was my decision to sell my home and buy another property closer to my Dad. The new house is in a much nicer area and is just around the corner from my Dad, so it’s much easier for him to keep an eye on me. It was important to me to be able to keep my own home rather than move back in with family because I’d worked hard all my adult life to pay for my house and I enjoyed my independence and privacy. It was also vital to keep my own place in case I wanted to have my own family in the future. Guillain-Barre Syndrome had taken so much from me, my ability to work full time, my ability to manage financially on my own, my social life and my freedom to travel, all now gone. I really didn’t want to give up on owning my own home and everything that comes with it.
But if like me, you live alone with a mortgage to pay, or even if you’re renting, chronic illness can make life incredibly hard. When I read self help posts from other people they’ll say, oh I don’t do the hoovering my husband takes care of that, or I’m not working at the moment because my partner earns enough for the both of us. They’ll recommend products or medications that are out of my budget and suggest delegating strenuous tasks to other members of the household who can help. I just don’t have those options. So if you’re in the same position as me then this post is for you!
I don’t work because I feel well enough, I work because without it I’d not be able to pay my mortgage.
A common misconception is that because I’m working then I must be feeling okay. That’s not the case. I’m exhausted and in pain all the time, whether I’m sat at home or out at work. I turn up for a shift at work when I’m feeling things a normal healthy person wouldn’t consider getting out of bed with. If I absolutely have to call in sick it’s because I’m not physically able to get ready for work, or to make the commute, or to stand on my feet for long enough to complete my shift. I try my absolute hardest to attend work for two reasons, one I need to keep as much of my “normal” life as possible and two my mortgage needs to be paid and I don’t have the luxury of being able to do without a couple of days pay at the end of the month.
I really struggle with the housework. Not because I’m lazy but because it’s WAY too much for one sick person to deal with.
Running a house single handed is hard enough when you’re healthy but when you’re physically unable to manage it’s incredibly difficult. I hate when people say well it’s only you how much mess can one person make? It’s not about the mess, it’s pretty easy to clear up after myself. What I find difficult is the physical aspects of everyday tasks such as dragging around a heavy hoover (especially up and down stairs it’s guaranteed to give me a sore back for days), washing up after eating because I’ve already used up all my energy to make the darn food, then given myself back ache being stooped over whilst I eat it and now I’ve to stand leaning over the sink to wash up. Then there’s the bed linen to wash. That means stripping it off the bed, carrying the heavy basket full to the washing machine, hanging it out to dry and then (the most difficult part) having to lift up corners of a heavy mattress to put the sheet back on, having to shake a heavy duvet to get it back in it’s cover, it’s incredibly heavy when you’ve sore aching muscles! The list goes on. I’ve just had to get used to the fact that these tasks now have to be done in moderation. Bed linen changed less often than I’d like, hoovering done weekly (after spending money on a very light cordless hoover because my old dyson is now impossible for to use), and dirty dinner dishes have to be left until I feel able to wash them. If that means leaving them overnight then so be it. Mostly I’ll try and cook something that doesn’t involve many pots and pans because it really bothers me having to leave a pile of dishes in the sink, but that’s just me! This leads me onto my next point.
My diet isn’t great but I’m trying my best. It’s not easy to stand and cook a meal for one when I’m in pain and I’m exhausted.
As previously mentioned, cooking and washing dishes is very painful for me. It would be lovely if I had someone to either cook or wash up for me but I doubt my cat will be of any use, so unfortunately it’s just me. If I can take a short cut then I will. If something goes in the oven then I’ll place a sheet of foil on the oven tray so I just need to throw away the foil rather than scrub the tray afterwards. I’ll avoid cooking anything that uses lots of different pans or utensils. Then there’s my budget restraints. Being unable to work overtime when I need extra cash isn’t a possibility when you’ve a chronic illness. My current income is less than half of what I was living off before I became ill. That means my shopping budget is never more than £50 a month. Factor in things such as essential toiletries and pet food and it doesn’t leave me with much left. That means simple, easy and cheap food. On the plus side I don’t tend to eat much junk food such as crisps or sweets because I can’t afford to buy them.
I’m not ignoring my friends, I’m actually really lonely. I just don’t have the money or the energy to socialise.
I’d of thought this should be fairly obvious given that if I’m ill then I’m not feeling up to going out and socialising. I’m not sure if people just forget that or they are too busy with their own lives to notice. Living with a chronic illness is a struggle for anyone. Loneliness can be very common, because it’s hard for other people to relate. Living alone certainly doesn’t help. In my experience people soon get fed up of inviting me to places only for me to say “sorry but I’m just not feeling well enough to commit to that”. Plans are impossible to make because good days are few and far between and when they do happen it’s certainly not on any timetable that I can plan around! It’s more a case of trying to make the most of the day if I find I’m coping with today’s pain level a bit better than usual. It would be really nice if friends paid me a visit or made plans to stay in with me but it rarely happens. I’ve found online support groups and social media friends have helped me to feel less alone. Especially the ones going through similar struggles. They understand when I’m feeling unable to keep the communication going, they don’t get annoyed if it takes me days to respond to a message. They’re just grateful when the response comes.
On the rare occasion I do have to make plans such as a concert or a trip away then I really need some help on the days leading up to it, to make sure I’m well enough when the time comes.
This is something I really struggle with. If I have made a commitment to do something on a certain day which can’t be rescheduled, then it’s really important I take steps to try to make sure my health is at its best prior to the event. For example, I’ll need days off work before and after and I’ll need to avoid things which are known to make my pain worse such as household chores or early morning starts. It’s essential that I have someone to help with the tasks that are unavoidable. Even just the preparation involved with taking a trip can cause a great deal of anxiety which in turn will make my physical condition worse. It’s so much better if there’s someone around to help.
If you also live alone and you can relate to my post then leave a comment and let me know your thoughts. It would be great to hear from you!