Thank goodness for small mercies. Which would be the mercy of tea, copious amounts of the stuff so probably not that small. And thankfully no-one reads this 'jabbering' on (apart from hubby of course, and he knows how I feel - most of the time anyway!) as even I know it's going to sound like self-indulgent whinging. I can't believe it was April last time I wrote on here... I mean, I know I dither but not this much! Anyway, it's fair to say that it's all gone to shit. So what's happened? One word (or three perhaps...). Relapse. M.S. And a nasty little bleeder it's been too, much more so than usual in my opinion. It's never nice of course but I was doing ok I guess, cruising along with the MS and life in general, feeling pretty relaxed with stuff and idly making plans. Getting cocky wasn't I? Don't get me wrong, the MS is always there, 'gently' reminding me that it's a permanent fixture, through fatigue, spasm, tremors, pain, etc, (I think you get the idea) but I think overall I was coping. It just goes to show how complacent I had become because at the start of May I noticed a disturbing trend but was refusing to panic just yet. Nothing major I suppose but I was having some real trouble at night with disturbed sleep, partly with getting up for an overactive bladder (several times a night!) and partly due to burning in my legs, especially my feet. No matter how cold I was elsewhere, the sensation in my feet was so bad that I couldn’t bear the bedcovers on them!
Anyway on Saturday 7th May (Lincoln were playing at home and hubby had gone to watch) I walked the dog (slowly of course) to the allotment and back – it was a sunny afternoon and I thought it would be good to get some gentle exercise and fresh air. However, I hadn’t realised how humid the day was, something that became more and more apparent as I walked back. By the time I had returned home, I was exhausted. My brother made me a drink and sandwich which I managed to eat, but despite a promise to do some baking with my niece that afternoon, I was soon fast asleep and ‘out of it’ for over two hours. Even when I woke up I was quite drowsy and it took some time for me become fully aware. I also had difficulty sitting up, the left side of my body had become distinctly uncooperative.
The next day I was still stiff and needed my stick to go outside but after a rested morning, things improved. I still took things easy as using my hands for cooking was not a hundred percent and I struggled to grip things properly – not so great when handling sharp knives or hot pans!
Monday I can’t remember too much although I think hubby and I had been to the allotment...
Tueday I went into town with hubby to deal with post and get some groceries. Yet despite taking things at an easy pace, I really struggled on the walk home, and as it felt as lead weights had been strapped to my legs and as if I was walking against gravity. I rested on the bed once home but still fell asleep for a lengthy period – hubby woke me up later with a cup of tea. Looking back I can see how things were shaping up but hindsight is marvellous isn’t it?
On Wednesday morning I saw Dr Zubair. I had been called in to discuss the referral to the pain clinic (as directed by Dr Sharrack) – slightly disturbed that Zubair didn’t know why I was there, and then questioned the referral but no matter, we got there in the end. I also spoke to him because my heartburn problem was proving to be particularly troublesome and the meds weren’t helping. He changed the meds back to Lansaprozole and also added Gaviscon to the mix. Lovely, chalk juice, just what every woman wants! He also said that he wanted to see me in 4 to 6 weeks to review how things were. You would think that I would have mentioned something then but it didn’t occur to me that there was really anything to discuss. However, the return home was the real problem. Normally I would walk back without any problems but then I arrived home exhausted – I slept all afternoon so fatigue was still a big issue.
I can’t really remember Thursday or Friday. Saturday was the FA CUP (which we won!), and Sunday was Martin’s bbq. Hubby did say that I was not looking well at all but I can't really remember how things were on those days. I have recorded in the main diary for Monday 16th May that I had been suffering with bad pain in joints at night (spasticity???), particularly in lower back and knees, and was not well enough to go to the vets with Stephen and Kato. Walking was now becoming a problem as my gait had become affected by the other issues and could only take paracetamol for the pain.
Tuesday was much the same (becoming housebound?!) but I was still in denial – I had spoken to my friend the week before about some arrangements but still didn’t really take into account how I was myself. Wednesday I was meant to going to Liverpool with H and unfortunately because she had been ill herself she wasn’t up to it. To be honest though, speaking with my non-deluded head on, even if she had have been I’m not sure I could have because by now the walking stick had come into play – my balance was all over the shop, I was in pain (both in joints with spasticity and neuropathic which was like burning pins and needles at any provocation, especially at night), my cognitive function seemed to be stuffed as I couldn’t concentrate on or remember anything, and the fatigue was miserable! If it looks like a relapse, smells like a relapse, feels like a relapse… you get the idea, I guess I knew then who I had to ring…
Thursday I was no better so bit the bullet so to speak and called Shannon. My, oh my, but it had all gone to shit! I feel so bad for her, so I feel lousy for saying this but was told that she has gone off sick until the end of the year at least, so no MS support really available – apparently all patients (unless it’s a dire emergency) are being directed back to their GP’s. I was starting to feel a bit scared at this point. Where to turn now? Now I had an appointment with Dr Sharrack (Basil for future reference) outstanding that I had forgotten to cancel (long story, NHS bollox, not worth asking about!) – anyway, Michelle Moir, the MS co-ordinator advised me to keep the appointment as my chances of getting another if I needed to, were next to nil. He is only at Lincoln 3 Mondays every month and Dr Bowen is leaving in June (no replacement either) so cutbacks are definitely being made. Apparently I was still in the system for physio but God knows when that would happen… I wasn’t going to hold my breath.
Friday I went to book club (I was sick of being stuck in and in desperate need of seeing friends!) but think I overdid it big time – I only helped to mix some cake mix and my arms ached terribly the next day so weakness was definitely an issue.
Saturday not good at all as overdid it with book club and Sunday rested for most of the day. I went to a family event but by 9 o’clock had had enough so did not stay out late.
Finally on Monday 23rd May I saw Basil, who wasn’t best pleased at my presence but he grudgingly conceded that I had ‘probably’ relapsed and promptly prescribed a 5 day course of high dose steroids. Luckily these were oral so didn’t have to be admitted. The next day I spoke to Dr Zubair, who didn’t understand the dosage requirements nor the lack of difference between IV and oral. I also spoke to rehab about any possible physio but was told I was ‘in the system’ (I have been for years) so was feeling a bit on my own with this and quite scared. Luckily Linda (hubby’s district nurse) recorded events in my notes. Started the steroids after testing urine (graphic I know but it’s the way it rolls in this house) to check levels (all normal).
Wednesday and Thursday were still much the same so pretty much housebound. By now I was getting fed up, very lonely and bored.
On Friday I felt terrible, both physically and in mood (side effects – yuk!) was upset with Sally, she naturally defended her own and was dismissive of my concerns,and the actual relapse so felt very unsupported by medics. However, late that day I had a call from Blue Maplethorpe (pain specialist nurse) who was very kind – she said that I was now in the system and even if she couldn’t help herself, she would do whatever she could. Hubby was also brilliant, went shopping, bought flowers and fruit, cooked meals and generally offered copious amounts of TLC. Saturday I was meant to go a much awaited life drawing class but was just not well enough so not happy about that – have to be careful though, not just with not overdoing it but with infection levels as steroids tend to batter immunity to nasties. Sunday morning I woke up after a very rough night with constantly waking and peeing – dipped pee and it wasn’t good. Walking was still not great but really it was the fatigue and being unable to stay mobile for long that was been getting me down. On Sunday afternoon I stayed in the kitchen to chop some vegetables for the evening meal and overdid it again. Just that was enough to leave me feeling very weak and shaky so needed to rest and was quite upset at how bad I felt after doing so little. I fell asleep for quite some and was not brilliant when I woke up, yet hubby stayed just the same though, being fantastic and putting up with me being a cow despite my brain still being like a nest of vipers!
Yesterday wasn’t really any different and there seemed to be a pattern developing between vegetating in the chair, doing basic exercises learned from old physio sessions, shuffling around the flat like Mrs Overall and sleeping. I know that it’s the sensible thing to do (in fact the only thing I can do) but to be honest I’m sick of being sensible. In fact, I’m sick of a lot of things, sick of no taste buds (a side effect), sick of side effects in general, sick of pain, sick of having to toe the line and take it easy, sick of trying to stay positive and cheery when I feel anything but, sick of being completely isolated, sick of not seeing friends, sick of having less choices, sick of watching hubby run himself ragged and not do things ‘the way I would’, sick of medics ignoring my condition, sick of not walking my dog, sick of cancelling things I enjoy or want to do, sick of letting people down, just sick of being sick! There is a lump in my throat where I could cry my heart out but I daren’t and I’m devastated that I’m even considering stuff that I never thought I would! Don’t be silly, I’m not talking about the final curtain or topping myself or anything like that but today hubby’s carer came to work her usual wonders and I actually found myself asking if she would push me out in my old chair (which has rotted away, happily in my view, in the shed for years) later in the week so I could gain some self respect and get my eyebrows and nails done. What a joke that is, to go out in that heap and actually try to gain self respect! Anyway, the Wheelchair Services guy came while she was here to do some stuff on hubby’s chair. After seeing the pickle I’m in, my chair was brought in. However, it was quickly decided that this wasn’t going to be an option in my escape plans! Emergency arrangements were made so that I can be taken out if necessary (and neat eyebrows are necessary, my dignity is slipping away fast enough as it is…) and it was also decided that a future appointment in clinic would be useful. On a better note, a letter arrived telling me that a physio appointment had been made for the middle of June. Yet I’m still struggling with all this and I know it might seem dramatic as it hasn’t been that long but I have to say that this is the shittiest I’ve been in a long while. I don’t know what else to say except that I’m not being a complete tool. I know that I’m lucky a friend came to visit today and listened to me whinge (I’m not sure she understands how much I appreciate her doing that but I do, really I do). I know that it could (and probably will) work out for the best and that I have to do my best to keep upbeat. I know that I have to cling on to that letter I received this morning and also to give it time, it’s early days and all that, etc, etc, and I promise I am but the lump is still there. Maybe I should let it out but I look rough enough as it without being all blotchy and snotty. I’m not a dignified crier and at the moment, dignity seems to be a precious commodity. Basically I’m clinging on, and with the aid of good books (Jodi Picoult is working well at the moment), Ebay, hubby’s TLC, and those cups of tea of course, I’m getting by. Hopefully tomorrow will be a better day. That's it. Whinge over. That's all I have to say. It's time for a cup of tea.
