My diary from the week before I was diagnosed with multiple sclerosis
I have written a book and created a podcast based on what I imagine might be written in the diary of my ginger cat, Weasley. Now I’m going to share a little of my own real diary.
Today marks ten years since my multiple sclerosis diagnosis. I was diagnosed with Primary Progressive Multiple Sclerosis at Christchurch Hospital on 23 September 2016. Last week was MS Awareness Week in New Zealand and I wrote a piece called Dear Doctor Who Thought I Was a Hypochondriac.
To help me write that piece, I pulled out the diaries that I kept in the years prior to my diagnosis in 2016. I went to put them away today but before I did, I read through what I had written in the week leading up to my diagnosis ten years ago today on 23rd September 2016. I’ve resisted the temptation to rewrite it with the benefit of hindsight. Apart from changing a few things for context and clarity, these are the words I wrote at the time.
NOTE: when I refer to TMS (tension myositis syndrome), it wasn’t a medical diagnosis that I’d been given. I had been reading Dr John Sarno’s work and was exploring it myself as a possible explanation for my symptoms.
SATURDAY 17 SEPTEMBER 2016
Almost all of my left side from my buttocks to my foot is numb. Why is it so bad now? I think it’s because I know it’s TMS and it may get worse before it gets better. Did calf exercises – I think that the calf muscle deterioration is the only thing that may not be TMS. Tidied up and sorted out the washing. Did cleaning and listened to the audiobook “Healing Back Pain” by John Sarno. Spent a lot of time writing, journalling etc. Spoke to Ben and Katie on Messenger then had dinner and watched Harry Potter.
SUNDAY 18 SEPTEMBER 2016
Strange day! After breakfast everything turned to custard. Felt very uncomfortable and didn’t know what to do with myself because the cramps were so bad. They lasted for about an hour and I was eventually sick. Also lost control of my bladder. Thought about going to after hours but my last experience there was so humiliating, I decided against it. Filled up a hot water bottle and went to bed and read. Pretty much stayed there all day because I felt so knackered! Got up about 3:30 and got dressed. I’m wondering if this might be multiple sclerosis? I’m not overly bothered if it is – I just need to know what is causing this. If I could rule that out then I might be able to work on the TMS (tension myositis syndrome) more, but I would like to have MS ruled out beforehand. Watched Harry Potter and went to bed but had cramps in bed.
MONDAY 19 SEPTEMBER 2016
Worked from home today. Had a burst of pain down my arm in the morning which happened just before I went to the doctor. I told her about the stomach cramps and arm pain and also that my left leg and side have gone numb. She thinks the tummy cramps are probably down to constipation. It doesn’t feel like that sort of pain but I’ll see how it goes. The other issues must be TMS but I’m no further along and still feel awful. Came home and carried on working then did some more writing. Managed to go to the toilet after taking the laxatives. It will be interesting to see if I have any more stomach cramps. I’m a bit worried because I can’t stop uncontrollably farting – just hope it doesn’t happen when I’m at work! Had dinner and watched Harry Potter before going to bed.
TUESDAY 20 SEPTEMBER 2016
Drove to work. Very scared about losing control of my bladder so I kept going to toilet regularly! I’m not so worried about my bowels as I’m constipated anyway but farting uncontrollably. God this is horrible! Realised I don’t actually feel the urge to go to the toilet at all and I can’t flex my pelvic floor muscle at all because everything below my waist is numb. Decided to get a second opinion so I made an appointment with Dr Ding (who I used to see before I moved to Diamond Harbour). It was lovely to see him again! He phoned Ronald Boet (the neurosurgeon who performed my spinal surgery) who he seemed to know personally to check if this was a medical emergency because of the toilet problems. It isn’t but he sent me to get x-rays and gave me some Diazepam to relax the muscles as it seemed that there could be pressure on a nerve. Went to St Georges and had x-rays. Picked up some groceries then came home. It was a real effort putting them away and getting around so had an early night. Katie back from overseas tomorrow!!!
WEDNESDAY 21 SEPTEMBER 2016
Went to work. Wasn’t doing too badly but had tummy cramps for an hour which were pretty bad. Worked away quite happily after that but struggling to walk. Left work at 2:00pm then drove to the airport and picked Katie up. Lovely to see her again!! Katie drove home and we had a wine and a chat then she had a shower and a snooze. She loved seeing Weasley and vice versa! Had some dinner then went to table tennis but the boys ended up upstairs and the girls were down here chatting. Nice evening but I’m really struggling to walk – right foot dragging badly and no strength at all in my right leg.
THURSDAY 22 SEPTEMBER 2016
STRANGE DAY!! Worked from home today as leg not really good enough to drive or walk from the car. Was going just fine until about 10 o’clock and then got pains down my arm and everything went numb down my lower half – arms, head etc OK. Katie phoned Diamond Harbour Surgery and they suggested phoning 111 so she did. The Diamond Harbour Volunteer Fire Squad turned up and later Nicky from the Surgery. They did some heart checks etc which were fine and then phoned an ambulance which took a while to get from town but OK as not top urgent. Got to Christchurch hospital and did the triage thing. Eventually saw the neurosurgery team and they sent me for an MRI. Katie went off and met up with Liam for dinner whilst that was happening. They not only did my lower back but also my upper back and head. It took nearly two hours! Went back to the ward. I’m in Ward 28, Room 10. Felt quite comfortable but very tired. Had a couple of sandwiches for dinner and Katie came back – she and Liam stayed nearby at the Ibis. Had a read then went to sleep.
FRIDAY 23 SEPTEMBER 2016
Had breakfast. Katie came in then she headed off to see Rae (her grandmother) and her Uncle Peter and Alison before they head back to Australia. Was seen by the neurosurgery team but then they handed me over to the neurology team. Everyone has been marvellous here. I’m starting to think they don’t think I’m a nutter just making up a series of random symptoms. Also got seen by a physio and they gave me this walker thing which is good because I can actually get to the toilet on my own but my right foot is dragging badly and the area around my hip is very weak. Had some lunch. Was seen by an Occupational Health nurse as will need to do something about work or get some support from WINZ. Had a snooze and a read then the neurologist came with her assistant. Examined me and then told me that I have multiple sclerosis which was pretty much what I thought so I actually feel quite relieved as I can now get appropriate medication and understanding about my symptoms, difficulties etc. Peter and Fiona were here before they arrived but went away and came back again. Told them the news and I think they were pretty shocked but relieved that I wasn’t particularly shocked. Katie came later and I told her and she had the same reaction. She said she would tell Ben and my sister, Anne. She was buggered so headed home. Had dinner and some of the new drugs then slept.