if we were having coffee, Musings, Wheelchair life

If We Were Having Coffee – Life Musing #11

Gemma - Wheelescapades

If we were having coffee I would turn up in my mask. Because although they’ll become optional from tomorrow, it’s an easy thing to do isn’t it, wear a mask (those actually exempt for health reasons excluded).

Ditching the masks isn’t the only event tomorrow. So called ‘Freedom Day’ is happening and it doesn’t feel very freeing to me.

If we were having coffee I’d fill you in on the new government guidance for the ‘Clinically Extremely Vulnerable’ (that’s me). They like the word guidance don’t they?!

As restrictions are lifted in England, I and many other high risk beings are to be cautious and aware. It is recommended that I limit my social interaction, go out at quieter times of day, try to avoid those that haven’t had both vaccines, and ask those I do see to take a lateral flow test beforehand.

That doesn’t sound very exciting, spontaneous or free does it.

If we were having coffee I’d ask if you know how I can tell who the unjabbed are as I’m going about my business in Sainsbury’s? Or if I should ask the barista at Starbucks if he could shove a little swap up his nose and wait 30 minutes before he makes my coffee?

Maybe someone could give me some kind of radar bleeper thing so I know who I’m ‘advised’ to be around.

Or maybe it’s not freedom day after all.

If we were having coffee I’d stop my ranting, because I’m sure you’re bored of it now. I’d tell you instead that I’ve been getting my brew on while I can, being carefully sociable, as I slowly feel the need to shield more.

If we were having coffee I’d tell you I returned to my favourite place. I met a friend in The Assembly House’s beautiful garden, listening to their water fountain as we chatted. It was just an Earl Grey this time, but hopefully afternoon tea is somewhere in the future.

A green hedge is across the bottom. Above a Georgian style building can be seen. There is a water fountain coming up just above the hedge. The sky is bright blue.

While in Norwich we went for a wander into the city. It was weird being back after almost 18 months, and seeing more beings than I had in a long time. It seems like forever but only yesterday that I would spend the day perusing shops and grabbing relaxing coffees with friends. Without even thinking. I did venture into one shop, Primark. The one place I haven’t been able to shop online.

If we were having coffee I’d tell you it wasn’t very exciting.

If we were having coffee I’d tell you I had chips in the park. I’m not 13 years old again, and no cider was involved. I’ve matured to taking a flask of tea, and getting fish with my chips.

It was Eaton park, where I went to not so long ago too. It’s fairly central for meeting my sister and there’s loads of play apparatus for the nieces. They’re still too young for the cider.

Upon arrival there was only one picnic table left, and I instantly knew this wasn’t the table for me.

A wooden picnic table with bench seats either side is in the middle of a sand area which is then surrounded by grass. The sky is clear and blue.

If we were having coffee I’d tell you that this remaining table was surrounded by sand. The quicksand table I have since named it. My wheels and sand are not a good mix. I didn’t want to be that awkward one again, the one that’s always causing as issue. So I tried to get as close to said table in the most shallow sandy area as possible. I got stuck.

After a bit of shuffling backwards and forwards trying to get friction and momentum, and a good shove I was released and back on the grass. Caving in and asking a nice man if we could switch tables (he was more than happy) I enjoyed my fish and chips and time with the family, even if yet again I’m left feeling the nuisance due to inaccessibility.

Talking of tables, I went to Roys of Dereham (those locals out there might know) for a cuppa with my Mum and friend the other day (because that’s how my life goes when you can’t get the staff) and came across what might be the most considered table ever.

If we were having coffee I’d tell you the place was deserted, just how I like it, so we had the choice of all tables there.

One of them, though, had a sign on it saying ‘reserved for disabled customers – please keep this table free for wheelchair users’. It didn’t look anything special, except maybe slightly bigger than the others. I felt compelled to sit there though, even if the rebel in me contemplated sitting elsewhere.

When driving up to the table I realised it’s secret.

If we were having coffee you’d have probably heard me moan many times about inaccessible tables (in this post already!), those too high, too low, and in particular the chunky farmhouse style that are deceiving in that they’re the perfect height but have that annoying bit underneath so I can’t get my knees under?! Well the annoying bit underneath this table had been cut in a curve to create the perfect knee groove.

Like this.

Photo taken from seated in wheelchair height. Side view of the table, there is a curved cut out of the wooden side where the knees would go under.

I’m not sure if this groove was just on the side I happened to sit, or if all the sides are like it. I was too busy doing the tracking check-in thing, anti-bacing, mask removing and constant alertedness that your lucky I noticed anything at all.

If we were having coffee I’d tell you I enjoyed my cuppa without sitting miles from the table. But something inside me still doesn’t sit right. It’s one table in many, that needed a sign to invite me, noting my difference. But it’s something. And that little something made me feel considered. For a minute.

If we were having coffee I’d give you one last update. You may remember last time, when I told you about the new drug, Risdiplam. The first of its kind for SMA. Well I’m on day 56 and I haven’t had any major side effects yet (touching wood somewhere). It’s main aim is to halt progression, but there has also been people experiencing gains. With a lot of hard work I must say. It’s very difficult to know if I’ve made any gains, strength or stamina wise. The placebo effect can be a funny thing.

If we were having coffee I’d tell you that I think I notice little changes like my hand gripping better and my breathing feeling deeper, and then I think back to how I felt a few months ago, and if something feels easier or I feel stronger now. But I don’t actually know.

Summer arrived (in its British form anyway) at about the same time as my first Risdiplam delivery.

If we were having coffee I’d tell you I always feel better in the summer. More motivated generally but also stronger. The cold really affects my movements and ability. The warmth loosens me up. Hunger is happening though, and that’s something.

If we were having coffee what would you tell me?

Title text If we were having coffee - Life Musings #11 is in white placed over the photo of a clear glass cup filled with dark liquid.

Published by Gemma - Wheelescapades

Whenever friends and I are out we always end up discussing, critiquing, analysing where we are and what we are doing. From talking about the food we are eating, the soap in the toilets, the awful bus journey to our destination, anything and everything we encounter. Because of my disability (SMA type2) many of the situations we get into, issues we discuss and laughs we have can be due to wheelchair access. Often me getting stuck in mud or shingle, or me making my way through the most cram packed shop you can imagine, wondering how I am ever going to find the way out again! I aim to write a blog that describes these dramas, tells stories of our laughs, adventures and frustrations, while giving detailed information on accessibility and wheelchair access. Also I like tea. ALOT. The quality of the tea often determines my return just as much as the accessibility.

20 thoughts on “If We Were Having Coffee – Life Musing #11”

  1. A mask protects others so mine will stay on in any building that is not my own or my families. I have stayed safe and kept others safe by doing what is right and I shall continue in that vein. Sharing this x

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  2. Over coffee I would tell you we are still masking and I am happy about it. I would rather we take it slow than fast. Like you still not into crowds. Am happy coffee shops are open as enjoy sitting and watching ekonf in them. Big thing here is the government for July and August have opened museums and art galleries in the province for free. So plan to take advantage of that.

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      1. Update since last commented. Still masking. The push here is vaccine – why don’t people just get it! So tired of the selfishness. Heard comment COVID is over! Seriously do they watch the news??? Get fatigue but that attitude not helping. Hope you are taking some things in and feeling safe. Take care.

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  3. I could rant all day long about the government and so called freedom day but I won’t bore you. My husband and I will be continue to wear our masks when we’re out and about – it’s not just about us it’s about other people. That table sounds like a step in the right direction. Glad that man agreed to swap the other table for you – we are still sadly so far off where we should be with accessibility.

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  4. If we were having coffee I would tell you to take all precautions to keep yourself safe…sadly, you WON’T know who could give you the disease – here in the US, our current spike in numbers are ALL from the unvaccinated…so sad, because we could be healthy and safe with each other if we all took part…the fact it has been politicized here in the US is shameful…

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  5. I love reading your coffee posts. I really feel like I’m there with you as I read. I can very much relate to the fear that relaxing regulations bring. Both my husband and I are “high risk” and the only guidance we’ve gotten here in the US is to “get vaccinated, but act like you’re not”, so that’s exactly what we’re doing. We won’t be going out or having friends over anytime soon. I hope we get some better guidance soon. Thanks again for a great post, and enjoy that British summer!

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    1. Thanks, I do ramble on a bit don’t I!
      That’s very similar to the advice here, ‘get on with it, or stay at home. But we won’t support you anymore’.
      The weather has surely ramped up a few degrees today, so we are sure to get rain again soon!

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  6. I read a good article recently, an opinion piece on The Guardian I think, about someone who said it’s like the government has thrown the vulnerable to the wolves. They can stay home for the foreseeable future and feel they’re not living their lives, or they can go outside and risk it with no support whatsoever.

    You’re right, you don’t know who’s been double jabbed and you don’t know who’s been careful, either. Sometimes you can get a vibe (the guy coughing up a lung and spitting on the floor or the one shouting across the aisle getting spit all over the cucumbers are to be avoided) but otherwise, it’s all pot luck.

    I see the government have ignored the thousands signing petitions to keep masks in place but they’re being more strongly recommended now. Lots of people haven’t bothered all year, so they certainly won’t now.

    I’m glad you’ve had a return trip to The Assembly House. It’s a gorgeous building, isn’t it?

    You are very civilised to do a cuppa with chips and not go for the 3l plastic cider bottle. After getting stuck, the cider could have been helpful. I’m glad there was a decent guy to switch places to make it a little easier. I bet my arse your sister & nieces don’t think you’re being a nuisance in the slightest, it wouldn’t cross their minds. They’re just glad you’re there and able to catch up.

    That wheelchair-friendly table is a great idea! Good job you quieted your inner rebel when you did otherwise you wouldn’t have learned its secret.

    I’m glad the Risdiplam is ticking along nicely. I’ve thought the same with meds and not knowing whether there’s any change or improvement in any way because it’s so hard to tell. Halting progression would be awesome, but of course I’d love for you to see some benefits from it right now too. How long is the average time for starting to see any improvements, do you know?

    Enjoy this ridiculously, bizarrely gorgeous weather, Gemma!

    Caz xx

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    1. As usual those of us with illnesses and disabilities are seen as lesser by this government. With the assumption that most of us just sit at home anyway. That not that many of us actually have lives, families, children and jobs. But there we are, and will be for some time I feel.

      In regards to Risdiplam, it varies hugely. The youngest children have seen the most benefit, with their bodies not yet deteriorated so much, there is more to save and work on. I’ve seen videos of SMA toddlers running around, which really is incredible, considering I never even crawled. It can be hard to see too, when I consider what could have been had the drug been around 36 years earlier. A stop in progression is still something to celebrate though, we just need to get NICE on side now. But to answer your question, some see tiny changes within a month, some don’t see any at all. I’m also probably not ‘exercising’ as much as some.

      As for the cucumber spitters, I’ll definitely be avoiding those! You never fail to make me chuckle Caz, thanks for being here!

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