Asperation joy and disappointment

 Yesterday was tough. Not at first. At first there was real joy when I had a minor procedure on my left knee. For many years I have had a ganglion there. It started off as a small bump. It grew. My then GP told me there was nothing to worry about as it didn’t seem solid or in a fixed point. It grew some more. And more. 

For years I lived with this ganglion on my knee about the size of a golf ball, not that I know how big a golf ball is. I would often bump into things with it. It became angry red and black with bruising. I couldn’t kneel down without it causing pressure on my kneecap. By now I had osteoarthritis in my knees and MS unbalance means I often bump into tables, chairs, doorframes, anything hard and in the way of my spectacular ganglion. 

It was the subject of much curiosity and speculation. “What is that?” “How did you get that?” “What is THAT?!”

Some of that came from medics. I kept reassuring people that it was just a ganglion. Nothing really to worry about but I became worried. Then my new Banbury GP told me he would get it seen to. He referred me for an ultrasound. And treatment, agreeing that it was more than just a minor inconvenience. I had that done yesterday. 

The radiologist agreed it probably wasn’t sinister, was easy to deal with and proceeded to perform the asperation. The ganglion went down. It was nearly flat. Hurrah!

Just a small plaster and we were leaving the hospital at about the time of the original appointment because they were running early and it was all done. The joy after so many years of living with ganglion to now have a flat, normal looking knee - aaah! :-)

But then… there is always a but. A few hours later it was back. Not quite as large as it had been but there is definitely a lump on my knee again. I am so disappointed. It’s not as defined as it was. More a spread of the liquid that shouldn’t be there. The ultrasound had clearly shown the ganglion mainly had two sections, one was considerably larger than the other. I think what I now have is the smaller section relishing freedom from its companion and spreading like a content cat relaxing in front of the fire. I’m not content. I’m disappointed. 

Actually that’s not quite true. Right this moment I’m happy and proud of myself. My husband, stepson and I are on our way back to Banbury after seeing a wonderful Xmas show in Oxford. Creation theatre company will be 30 years old next year. I’ve seen and acted in many of their productions. This was the fourth Xmas Creation show we have been to. Nutcracker at the North Wall (a venue built on what used to be my local swimming pool as a child!) was imaginative, beautifully staged and enjoyable for young and old alike. But what makes me proud?

We parked the car in a Blue Badge car park bay about half a mile from the venue. And I walked all the way there. And all the way back to the car after the show! With the help of Jem of course but this was my first major walk since breaking my leg. And I had an asperation of my other leg’s knee yesterday. Proud? You bet I am!

Filling the gaps

I’m trying to remember what I’ve forgotten. I keep falling at the first hurdle. It’s like there is a tickle of a memory sometimes followed by a trickle but never a torrent or gushing brook. Oh no all these streams are making me want to pee again. 

I had a bad day for close calls on the incontinence front recently. I am getting close to needing another batch of bladder Botox. The other day me and my husband were on our way to see a great fun show in Oxford. From Banbury. 

Did I mention that I have moved? Well sort of moved. Covid made it silly to keep living in separate homes. I still own my flat in Oxford and many of my possessions are there but the address on my driving licence is now Banbury - my husband’s house. Anyway back to the continence issue. 

For many years the gift that keeps on giving (MS) has caused me to suffer with urinary urgency incontinence. That’s a mouthful to say.  One of the joys of bladder Botox is that I have some respite from this troubling symptom. But at the moment it is coming back and is accompanied by occasional fear that I will pee or even poo before I get to the toilet in time. Tena pants are bought in bulk!

I was a passenger in my Motability car as my husband drove. The pressure on my bladder was getting more and more intense. I had peed before we left home. I had even peed at the cafe we visited before heading off to Oxford. But I had drunk a Diet Coke. It’s a fatal flaw in any travel plan for me. For some reason this particular carbonated drink causes bladder and bowel action. Not instantly but usually inconveniently when there are no nearby conveniences. (Lovely lavatory language we have in England don’t we?!)

This time it was practically a race against time. Toilet time. We were in the car. The pressure was becoming unbearable. It was a dual carriageway with no stops. For miles. My husband could tell I was in agony. Fortunately he knows exactly which town (in this case the largest village in England) on route has public conveniences.  Would we get there in time? Would we find somewhere to park? Would the public WCs be open if we could even answer the two previous questions positively?

I feel like I am setting up some suspenseful trailer. Tune in next week to find out. 

No that’s alright. The answer is yes. But it felt like a nightmare at the time. And even when I had been able to use the conveniently located conveniences, the cubicles were so narrow I couldn’t self catheterise and knew I would have to pee again before too long. It was slightly less urgent this time but I was glad to arrive at the show venue where I knew there would be an accessible WC and it would be clean and comfortable and there would be toilet paper. Not that the public WC didn’t have those qualities but it was very public. I could see the feet of others waiting to use the loo under the door whilst I was availing myself of the facility. And I could hear their conversation. Well most of it. Part of me wanted to stay a bit longer. To linger so I could find out who Kate and Alice and Pete were going to “do over” and exactly why. And what tools they were referring to. But, you know, sometimes it’s good to leave the gaps. I can fill them in my imagination. I’m pretty sure it wasn’t serious. I don’t think I need to ring the police. After all it is Xmas time and lots of people decorate there homes at this time of year. 

Happy holidays and good will to you all. 

Did you miss me?

 I bet you didn’t. 

I don’t know for sure if I want to be back here. It’s been over a decade and a lot has happened. I’ve gone from being relapsing remitting to secondary progressive. I’ve met and married a wonderful man. Actually those are the two most important things that have happened. Bugger I don’t know if that first one is correct. 

I don’t think I’ve exactly had a relapse in the past decade or so but I have been admitted to hospital. At least once. I think I had a UTI. Well, I know I’ve had more than one uti but I think one of my hospital admissions was solely because of that. It’s hard to remember. In fact that’s probably why I’ve come back. I need to remember. Or at least I need to diarise what is happening so I can make sure I have a record of what’s happening. I need to have something I can look back on and go “oh that happened then.”

The thing that has happened that has prompted this return to my long neglected blog is I got the news yesterday that I have two new lesions on my brain. 

They may not be that new but they have shown up on my most recent head MRI and I don’t think I’ve had one of those for a long time. The two little buggers were unexpected. Definitely uninvited. I only had the MRI because my neurologist set it up as a precaution due to me mentioning a previously unnoticed symptom. She hadn’t expected there to be this change. I got the message through NHS app and text on Monday that she wanted to phone me the following day. 

Apparently I have been discussed at a neurology team meeting and there are a few options. I didn’t take notes during our phone conversation. I wish I had. I think I am going to get a call from a neurology (presumably MS) nurse. I think I can go back on a DMT (disease modifying therapy). It’s only looking back at this blog that I am reminded I had sworn off ever going back on a self injecting DMT. I know I had partly welcomed being deemed to have transitioned from RRMS to secondary progressive a few years ago because it meant no more relapses and no more painful self injections. I definitely know I had been told I was now secondary progressive. I’ve even been on a trial for treatment of secondary progressive MS. I don’t know whether I was on the real or dummy drug during that trial but it doesn’t matter now because these two new lesions have well and truly thrown a spanner into the works. 

So here I am. Back on my Toots MS Truth journey. A bit older but probably no wiser. Let’s see where it takes me. Welcome along for the ride. 

Taboo to you - BOO! I'm back!

It has been a ridiculously long time since I blogged and I am not going to try to explain why. Not least because I'm not sure why. Today I had a conversation with a dear friend who has a blog I didn't know about before (laraknowlden.blogspot.co.uk). Her most recent post included such truth and honesty it has inspired me to write here too.  This might be a diversion exercise as I should really be writing episode running scripts for my new online TV show http://www.wawow.co.uk!

Lara says: "In some ways depression and also the menopause are more taboo subjects to discuss than cancer." As I blur the lines between anonymity and a public face, it can be hard to be honest. To tell the truth, the whole truth and nothing but the truth. There are so many taboos.

I am more honest about my multiple sclerosis than I used to be. It holds less fear for me to say I have MS when in professional situations. I more frequently take my stick with me when auditioning or meeting people who might be employers. Of course, this might just be that walking without it has become more difficult as I fall over. A lot. Don't worry, the ground always breaks my fall.

I expect fewer people know that I am in menopause and some of my regular meds are for (probably MS related) depression than know that I have MS. Yes, I take anti-depressants to keep the depression at bay. This makes me think of my need to attend continence advisory clinics. I have to remind myself that it is not with an 'incontinence' nurse. I seek continence, both bladder and bowel. Too much information? Is that the biggest taboo?

I confess here that not only am I having tests related to a mega period-like bleed despite being in menopause and on HRT (partly to protect my bone density). And I take the aforesaid antidepressants. And I have MS. I have also had several (more than 2 less than 10) 'accidents' recently. Is incontinence such a taboo that even medics refer to it as accidents with me? The accidents have meant I have to do more washing - the increase in washing detergent use alone must be part of what my DLA pays for. And a few weeks ago, I had to clean up the driving seat of the car I had only just bought. I didn't have to buy the car because of that 'accident'. In fact I am thankful the driver who rear-ended my previous car causing it to be written off, didn't also cause me to have an 'accident' of that nature. That would have been embarrassing. The driver works for an insurance company. I think that’s a bit embarrassing.

So, what are the taboos? As an honest person, how much about my life can I or should I talk about, openly and honestly? I am online dating in the hope of meeting someone with whom I can have a relationship. Is that a taboo too? What are taboos and what are examples of them? At least, I don't fart in public... oh, hang on, yes I do! 

As Time Goes By

Every morning my 8am iPhone alarm song tells me "You must remember this" and sometimes I think "why? Why must I remember?" I can't remember what I did yesterday let alone what I am supposed to do today. And I hate anyone telling me what to do. But when that 8am alarm goes off, I know I'm supposed to take my morning meds. And I usually remember to do so. Even if I have put the alarm on pause two, three, four or even more times.

For the last goodness-knows-how-many days, each morning I have thought I must write a blog post. But I hate even me telling me what to do. So I don't. I have thought up lots of posts, things I wanted to say, or titles I like even if I don't know what the post will be about. And then I don't write them. And they're gone. I can't remember what I was going to say.

But not today. Today I am going to write. Today I have the title and I have the post. And this is it. Time has gone by and continues to do so. Sometimes painfully. A very dear friend of mine buried his partner yesterday. Or rather there was a funeral followed by a private short service at a crematorium. It was an inspiring event. The church was packed. Overflowing with love and respect both for the man who was gone and his partner who remained, bearing the unbearable with fortitude. There were readings, reminiscences, songs. And tears. There are always tears.

Everyone remembered good things about the great man who has died so suddenly, too young. And remembering brought laughter, smiles and heartache. I hope I will have what my dear friend had. A partner who is talented, loved, and respected. If the world will always welcome lovers, so will I. I just hope one of them is mine! As Time Goes By

Senseless

I cycled into town today to meet fellow MSSY group members for a drink (that's a defytheMonSter* feat in itself) and I wondered how much time do we spend not seeing, not hearing, not smelling, not feeling, and, yes, not tasting... I must remember to keep my mouth closed when cycling - I'm vegetarian and flies don't taste good**!

On Talulah***, I picked up wonderful blends of smells, scents, aromas and indeed some proper pongs - ewww. For the most part, I felt alive, connected. 

The fact that I could hardly walk when I'd parked up Talulah (and dropped keys, water bottle and helmet - twice each) didn't detract from the fact that I had gone out. I took that bold step of being in public. 

I have been doubting myself a lot recently. I feel more alone than normal. I love the summer. I love that sunshine brings people outside. I love that I see and chat to my neighbours. People are more likely to eat outdoors in the sunshine and the food tastes better. But, as empty weeks of summer stretch ahead, I want to be loved. I want to be respected. I want to be liked. All three would be great. Can you hear me? Or is this senseless?

* I have started this hashtag on twitter in an attempt to focus on the positive - there is always something, every day, that is an achievement

** I do keep my mouth closed and didn’t swallow any flies but it’s funny

*** Talulah is my electric bicycle - she was an expensive but fabulous addition to my life

It's not the Andes

I went to the gym as usual on Wednesday morning. Okay, it's not entirely usual in that some Wednesdays I'm busy doing something else, debilitated by MS fatigue or simply not in the mood. Wednesday morning is Neuro Group at Oxsrad. From 10 til 12, we work out gently and constructively. There is always a physio or physio assistant there. Some people come with their own carer / partner / companion / coach. We all support each other. Noone says "do more, work harder, faster, more weight".

I was quite pleased with myself yesterday. Not just because I went to the gym. I did my full routine - every exercise planned by my physio - no more, no less this time. Whilst taking a little rest between units, I chatted with a (now) friend who attends and often astounds with the level at which he exercises. Fast and high impact. He has slowed down a lot recently and says he is benefitting from taking things a bit steadier. I came up with this analogy -

Each unit of exercise/use of a machine is like climbing a mountain. It's not easy but we do it. And then we go on and tackle another mountain. However, we often need to have a rest in between mountains. This allows our bodies to process what we've just done. We may be in the middle of a major mountain range but we don't have to tackle it all in one go.

Coincidentally, today I googled the Andes and the page I clicked on - Andes - is headed with an advert for Serif's WebPlus. I have just created a brand new website for my professional persona as an actor. I've never done one before. Using a WebPlus package, it didn't take me too long to design the site but the hardest bit seemed to be publishing it. I have succeeded and will have the control to update my website whenever I want. It was a big learning mountain to climb and I am sure there will still be unseen rocky outcrops to navigate. But it's not the Andes and I don't have to tackle it all in one go. Good luck with whatever mountains you encounter and conquer today.