This morning MS.net challenged me with the following question: what do you want people to know about MS? I haven't blogged for a while and this was a good prompt to start up again.I am reaching the end of my counselling and psychotherapy training and one of the main areas of my client work is formulating a plan for clients to be honest about how they feel. Sometimes, we can expect our loved ones to be mind readers and when we complain that those around us and even the media do not understand our illness, we have to ask ourselves whether or not we are being open about how we feel physically and mentally.
I recently travelled to Venice (another blog to come) and caught a virus that led to a chest infection so I have now been unwell for two or three weeks. Even though this doesn't happen all the time I thought it would be a good idea to restrict myself to the past week and truthfully share how I felt each day.
On Monday I still felt so unwell I didn't go to college. I had a sore and strained throat, a rattling cough and blocked sinuses. As well as this I had some dizziness, and aching muscles and joints. I assumed this was to do with the virus and dosed myself up with some Beechams and the last dose of my antibiotics. I laid in bed reading and waiting for my medication to work, but started to feel drained and exhausted so went back to sleep until 12pm. I felt a little more alert so visited a friend, who asked me to stay the night because I looked so tired she was worried about me driving home.
On Tuesday I woke up and ached all over, especcially in my lower back where I had a burning feeling radiating out from my spine. When I got up and started walking I had the oddest sensation and it is hard to describe. I felt as though my hip joints were slightly displaced and I was walking on the edges of my feet. I tried to walk but kept stopping to stretch my joints and try to get them to 'click' back in to place. I found walking difficult and a bit 'wobbly'. I didn't trust my joints and was a bit tentative. I started to worry that the chest infection I'd had was now impacting on my MS. No matter how much I tried to move the joints, they still felt odd every time I walked. I had my hair washed and dried by the hairdresser who visits at home, but when I lifted my head out of the sink I was dizzy and walked into the door frame. My arms felt heavy, and I spent most of the day laid on my friend's couch reading or sewing.
On Wednesday I returned home because I needed to work on my assignment. I wrapped myself in a quilt on the sofa and began studying but I found it hard to read as much as I needed to. My eyes were sore, the words were swimming all over the page and I was nodding off all the time. The sense of displacement in my hips was still there, but now my shoulders also felt odd and every time I stopped to rest them I had pins and needles down my arms and into my fingers. I started to worry about slowly I could work, and tried to keep going but fell asleep. I went to bed early, but got up in the night with the same burning pain in my lower back. I drank a lot just in case it was my kidneys, and then couldn't get back to sleep till dawn. I then took some medication and slept until lunchtime. That afternoon my friend and I managed to go out for a coffee and a bit of comfort spending! In the tearoom we usually use I found it very hard to negotiate the old, uneven floors and steep steps. My leg muscles burned and I had no balance. As the afternoon went on I got slower and slower and 3 hours was enough, even with the long rest and pot of tea. That night I was nodding off before tea time and had to go to bed early.
On Friday I woke early and returned home to meet a boiler engineer, and got my central heating back up and running. I ran a hot bath and although I struggled to get back out, I found it relaxed my muscles and reduced my pain considerably. I then worked on my assignment for the day, while laid on the couch with a quilt to keep me warmed. I used a hot water bottle for pain relief but had to take a lot of breaks from typing and reading. I had the same issues with my eyes and reduced function in my arms. Every time I got up I had cramp in my thigh muscles and a combination of muscle and nerve pain in my back and arms. I noticed that my cognitive abilities were affected today: I found it hard to copy quotes into my assignment, or to deal with numbers as I did my bill paying and made several mistakes. I realised that I had forgotten to pay a bill the previous month which I had to smooth over with the company involved and explain that I have MS. I am increasingly having to direct debit all bills so I don't forget to pay them. I did my stretching exercises and then had a long sleep into early evening, then still had to go to bed at 9pm.
Today I managed to get up by 10am. I had severe pain on waking and have used the same medication and hot water bottle combination to relieve the problem. During the typing of this I have had to stop and stretch four times. I have a patch of severe pins and needles and nerve pain down the outside of my left thigh and my shoulders feel hunched and stiff. I have tight bands of muscle pain round each upper arm and I can't feel the outside of my hands or little fingers. Every few minutes the feeling of someone 'walking over your grave' pulses down my right leg and radiates behind the knee. My feet are frozen despite socks and fluffy slippers. My neck has started to stiffen today and I have cramp every so often in the right side of my neck which means I have to stop whatever I am doing to stretch, relieve it and then rest for a while.
It is hard to be honest. With MS there is the feeling that no one believes you're feeling ill, because very few of the above symptoms are visible. Walking into the door frame doesn't go unnoticed though! The postman is probably the person who sees me in my most honest state because he has started to realise that I am having a bad day if I open the door with my hair not done and still in my Snoopy pyjamas. It is probably even more honest for me to admit that all of the above is normal, despite having a prescription of amitriptyline, pre-gablin, paracetamol and 12 hours release morphine capsules. I also have naproxen that works as an anti-inflammatory for my joints; solifenacin and vitamin d with calcium for my bladder which is prone to calcifying urine and infection; levothyroxine for my under active thyroid; acupan and baclofen work on muscle spasm and nerve pain. I don't tell people about this because I can see the alarm when I pull out my pill box and I am worried people will think me totally incapable.
These days I spend at least one - two days in bed whether that is 24 hours, or a series of mornings. I cannot walk far and I am uncomfortable wherever I go. When my friend and I plan holidays we spend a long time looking at cottage or hotel interiors to see if the couches look comfy. In the last year I have had to accept help from the rehab team who help me with occupational therapy and physio but they come to me because of my fatigue. I also have help in the home, with someone coming in to iron and clean the house top to bottom. This has allowed me to look after myself better, but it is still taking time to adapt to my new 'level'. I guess I want people to know that MS is not easy, even when it is not visible. I want to ask people not to judge but take me at my word when I'm telling you about my lived experience.
