I don’t like dwelling on the fact that I am in pain all the time. I find that the more I think about it, the worse my pain becomes. I have spent a lot of time over the last 18 months denying the fact that I do indeed suffer from chronic pain and it has taken a lot of mental capacity to accept this, but I now that I am more readily able to accept that this is part of my life, I find I am able to cope somewhat better.
As with most people who have chronic pain, I am in pain every day, but there are days and weeks when I get a flare up and during this period, the pain is greatly increased and I am virtually unable to function. When this happens, I try to push through, but I have found that this actually makes my recovery time longer and harder. I have started putting a list of my must-have items together for a flare up and thought I would share it with you. Whilst everyone is different and this list may not work for everyone, I thought it would be a good insight into what helps us and how our family and friends may be able to help out when we are just unable to do much at all.
Leggings, baggy t-shirts, big jumpers and fluffy socks are what get me through a bad pain day. I don’t want anything that is too tight or ill-fitting as I don’t have the energy to rearrange it. Pyjamas and my husband’s clothes also work well.
Hot water bottles are my saving grace. There are days, weeks and sometimes months of the year when I would be completely unable to function without at least one. Cold weather makes my muscles seize up and increases the pain that I am in and staying warm is an absolute must. I struggle to regulate my body temperature in extreme weather (i.e. the depths of the winter and the height of the summer) so hot water bottles can help me keep as warm as I need to.
When I am in a lot of pain, I cannot tolerate anyone touching me, but at the same time, I feel like a big squeeze would help calm everything that is going on in my body. I achieve this feeling by surrounding myself with heavy, but soft, blankets. I make my own little cocoon and stay there as long as it takes me to start to feel better. I bought the most beautiful blanket last winter that I bring everywhere with me. It is large and soft and fluffy and just being wrapped up in it makes me feel better. I am considering making my own weighted blanket too. There are lots of ideas on Pinterest and I think it could really help on the days where I feel I need extra pressure on my body to help me feel better.
I would love to tell you that my favourite comfort foods are really healthy – but they are not. Currently, peanut butter cups and chocolate chip muffins are my comfort food. I find a slow cooker really helpful to have as I can prep meals in minutes and have good, stodgy comfort food on hand (or in the freezer) without much effort. Easy to prep food is good to have in the house and I love fruit too. A water bottle with a sports top is handy as it means I can drink without having to move very much.
Issues with concentration, or brain fog, go hand in hand with most chronic illnesses. As if dealing with the pain isn’t hard enough! On bad days, I really struggle to concentrate on much so I love rewatching my favourite comedies. They are easy to watch and can really help me feel better. My current favourites are Friends, The IT Crowd (I am so late to this but I absolutely love it), Cuckoo (another absolute favourite) and the one and only Fawlty Towers. I have seen all of these repeatedly, but I know that I can watch them without needing to concentrate too much and still laugh.
Out of everything I use in my life to help me cope, pain relief is the most important. Compared to the majority of people who have chronic pain, I take next to no painkillers. Again, I think this goes back to the denial aspect of the illness. Considering, I am in pain every single day I probably only take pain relief once a week or less as I try to cope in other ways. For me, the plus side to taking medication so infrequently is that when I do take it, it works really well. Pain relief doesn’t just mean pharmaceutical products. I rely on heat patches, hot water bottles, heat creams (such as Deep Heat) and massage to help me with the pain too.
My back goes into spasm – a lot. It is one of my main triggers for a pain flare up. Sometimes I can manage to get my husband to ease out whatever is happening, but when he fails, the only option I have is a massage from my physiotherapist. Due to the aforementioned spasms, she is the only person (other than Michael) I let near my back because even the slightest wrong move or too much pressure can cause massive issues, such as not being able to stand up after the session. Finding someone who knows my body well enough to give me relief and not cause further pain and who listens to me and my symptom of the day has been absolutely invaluable. When you find someone like this, hold on tight because they are few and far between and can really help alleviate your pain in a time of crisis.
So far we have chronic pain and the inability to concentrate very well. Now add poor sleep on top and you have the perfect combination for a shitty few days or weeks. If my concentration allows, I will read a book. This happens mostly late into the night or in the early morning when sleep is alluding me. I currently read on the Kindle app on my Samsung tablet. It’s not too heavy to hold up and I can prop it up on the bed if it gets too heavy for me and I don’t need to worry about losing my page. The screen brightness is adjustable making it easy on sore eyes.
I have already mentioned that I watch comedies or attempt to read when I am having a flare-up. There are days when I can’t get out of bed or off of the couch so I need to have everything at my fingertips and this is why my tablet is so handy. It has everything I need in one place and it’s not too heavy so won’t add to my pain when I’m holding it up.
Every sense is heightened when I am in pain and this is even more prevalent when it comes to sound. The louder the noise around me is, the more it irritates me and just kind of sends me out of whack. Having headphones means I can have whatever I am watching or listening to on as quietly as possible and avoid all the noise the kids are making. It is a win-win situation!
This is kind of a tricky one because actually having the energy to get up and get into the water can be really difficult, however, if I force myself to do it and prepare well enough in advance, then along with massage and pain relief, swimming is the most effective way I have of coping with the pain. The water is miraculous (I am sure there is some scientific explanation) at reducing the pain and feeling weightless relaxes all my muscles so well. Not only is swimming great for my physical health, but it greatly improves my mental health too, meaning that it really is one of my best tools for coping with pain.
Support from Family and Friends
Everything I have mentioned so far is great but if you don’t have the support of your friends and family, then you may really struggle. I think one of the greatest challenges faced by people with a chronic illness is the fact that they look perfectly fine on the outside, yet what is going on inside, tells a completely different story. The support of good friends and family and the understanding that it is okay to be in pain or unable to doing anything, make an untold difference to your life.
Whilst this is a collection of what works best for me, it may not work for everyone. It can help to speak to the person in your life who has a chronic illness and see what works for them. It is important that we don’t stigmatise invisible illnesses and we can help do this by talking about what works for others and how we can help them feel better on their bad days. Avoiding the situation completely only leads us to keep it bottled up for fear of irritating people by talking about it ‘again’!