Living Life, Within the Limits of Chronic Illness

Author: Clare Page 1 of 56

Quietly Plodding Along

I have to admit I’ve been quiet of late, in part because I don’t know what to write about. But also because my life has become busier; more people at home more often, more housework as my Mum continues with caring responsibilities and more cancelled appointments to keep track of so that I know what to chase once hospitals return to more normal service. All of that uses more energy than usual.

There’s also a lot to be said about the uncertainty and anxiety that comes from living during a pandemic, that uses energy too. I never know what to post; should I try and be upbeat which is how I usually try and remain as much as possible? Or should I post the God honest truth of things?

Well this post is going to contain some of the latter, because I need to spill it out somewhere and here seems as good a place as any.

Like so many people, I found 2020 to be a hard year. But, I suspect I’ve found it hard for some very different reasons to most. I’ve essentially been shielding since March; not officially mind, and for the most part not by choice either. I’ve been “lucky” enough that my health has been so unpredictable, and at times poor, over the last 9 months that for the most part leaving the house hasn’t been of interest to me. Because quite simply I’ve barely felt well enough to be in the garden some days, let alone further out of the house. I’ve been out about 7 times since March, between August and September I think, and two of those were trips to hospital and emergency dentist.

Managing my medication during this pandemic has become something of a nightmare. I dread each time I have to request a prescription because it seems almost inevitable there will be a problem somewhere along the lines; from the doctors surgery claiming they can no longer prescribe something, to pharmacies requesting I change medication to something totally unsuitable and beyond. I’ve had to change one medication three times since the beginning of this pandemic due to shortages in supply, and each time it was changed they tried to swap it to something that does a similar job for its most common use, but not the job my consultant had prescribed it for so I had to do my research and put up a fight.

It probably won’t come as too much of a surprise that most medical professionals don’t like it when you know more about your condition and how it’s managed than they do.

I’ve also had to change pharmacy three times during the pandemic; each one I’ve been with has been unable to get one of my medications (a different medication with each pharmacy). And even now there are delays in getting some of them, but my current pharmacy has (thus far) managed to supply everything I need. So fingers crossed that’s one problem solved!

2020 started holding so much promise of progress in terms of learning more about how my body is (or should that be isn’t?) working, and trying things which could help get symptoms better controlled, thus improving my quality of life.

I know we are in unprecedented times. I know the NHS is under an enormous strain. But I have to admit with each cancelled appointment, with each referral (made before the pandemic began) I haven’t heard back about, a little bit of hope slips away, and bleakness slips in. How long will it be until I see one of my doctors again? How long will it be before we begin to understand just how my body works (or how it doesn’t work)? How long will I just exist here, with returning symptoms and worsening pain levels putting off trying to contact a doctor because they’ve probably got more important things to be doing or are probably overwhelmed with other patients for me to bother them with something I’ve actually had before, even if it hasn’t been this bad for a while?

That’s not to say things have been all bad on the medical front; one of my consultants has been working together with my general practitioner (GP) and I’ve started new medication to help manage the fainting and dizziness a bit better. And I’m happy to say that for the most part its working well. I still have bad days, or even bad weeks where I get dizzy very easily, but its nowhere near as frequent as it was before.

The only downside is it suppresses my immune system. I don’t quite know what that means for me when it comes to my risk of catching viruses and infections yet. I was hoping, given the current situation with the pandemic, I’d have been given some additional information about that, but alas thus far that hasn’t happened. Not that I suppose it matters too much anyway because as I say I’ve only left the house a handful of times in the last 9 months, and we’re employing our usual winter hygiene methods year round; I say usual because we always have to be extra careful during winter as I frequently pick up any bug that’s going round, doesn’t matter if I haven’t been out, no one else in the house has had symptoms or not, I’ll get it and it’ll knock me for six. Plus of course now my family are using masks when out and about as the guidance requires them to.

Despite all this, I’m still plodding along quietly. Drafting new posts for this blog as and when I’m able to, pottering about the house doing the little tasks I can to help my parents out, keeping my physiotherapy up as much as possible and generally keeping track of everything that’s been put on hold due to the pandemic. But quite honestly I’m getting fatigued more easily than I was, my pain levels are higher than they were and keeping everything going is getting to be a little bit too much. So things might be quiet here for a while, until I manage to figure out the new balance of things.

For now, stay safe and keep as well as you possibly can.

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2021 Goals

At the end of 2019 I posted a small paragraph in my 2019 round up post (which you can view here) with some things I’d like to do in 2020.

“As for 2020, there’s already 4 hospital appointments booked, here’s hoping they’ll all prove helpful! I’m also hoping to arrange meeting up with some more of the friends I’ve made online, health permitting on both sides of that one! To finish decorating my room and unpacking my stuff which has been boxed for two years now, as well as making it to the Christmas Carol Service at church, which is one thing I didn’t manage this year due to poor health.

Here’s to making the best of 2020, whatever it might bring!”

2019 Blog post

Little did I know at the time how meaningful that last line was going to be to everyone!

As for me, well I’ve made the best I can of 2020. Only 3 in-person hospital appointments, a few telephone appointments and numerous cancelled ones mean there has been little progress on the medical front. Unsurprising given the pandemic and the pressures the health service is now under. But the ones which did take place proved useful.

Of the other things I hoped to do, many have been impossible due to the pandemic; meeting up with friends I’ve made online, and attending the carol service at church have had to be put on hold. Perhaps they’re something I’ll manage in 2021 though, once the pandemic situation improves!

Despite having only left the house a handful of times over the past 9 months (I can count them on one hand!) I still haven’t finished decorating my room. However I have unpacked the boxes and started getting a bit more organised.

I’m reluctant to set any goals for 2021 at the moment; while it can be nice to have things to work towards and even look forward to, my health really isn’t all that good right now and combined with the uncertainty surrounding the pandemic I have no idea where to start. There are so many things I would like to aim for, or even say I’m going to do, but I know in my heart of hearts that with my health the way it currently is the chances of managing them is very remote. And I don’t want to be reading this back at the end of the year full of disappointment at what my health, and potentially the pandemic, prevented me from achieving.

So for 2021 I think I’m just going to aim to make the best of it and see what happens. Fingers crossed it will bring better things than 2020 did! I am going to try and document the good things throughout the year, both through social media, this blog and by keeping a good old fashioned list so at this time next year I can look through and see what I’ve managed to do.

Wishing you all a happy, healthy and most importantly safe, New Year! Here’s to making the best of 2021.

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Christmas & M.E

Well it’s that time of year again. The time where everyone wants to see each other, spend time catching up and having a good time.

It’s a time I always look forward to and dread in equal measures. And I’m sure I’m not the only person who feels that way.

As I write this I am propped up on the sofa with my feet up, under a duvet with boxes of Christmas cards scattered next to me waiting to be written.

You see, with ME or any other chronic illness there’s pressure to join in all the festivities. And I mean all:

  • Sending Christmas cards
  • Putting the decorations up
  • Christmas Shopping
  • Present wrapping
  • Carol services
  • Family parties
  • Visits from friends
  • Visits from family
  • Family get togethers; on all the festive days – Christmas Day, Boxing Day etc.

And there’s probably more I’ve forgotten to mention.

I know friends and family don’t mean to put pressure on to send cards or attend these things, they mean well and just all want to see you and catch up. But even if it’s unspoken pressure, it’s still there.

And it’s not just Christmas either, this continues to New Years Eve.

People forget what happens in the lead up to Christmas. Because they can cope with the extra work that comes with it, they don’t give it a second thought.

But for someone with ME, or other chronic illness, joining in with the preparations takes energy in itself. Just writing cards can be incredibly difficult due to fatigue and painful joints. (In fact this year I’m cheating and only writing who the card is from inside it due to pain making it difficult to hold a pen!)

By the time the actual event comes round energy levels are often lower than usual. Meaning joining in social events at home, let alone leaving the house can be quite a task.

Symptoms are often already flaring; fatigue will be higher than usual having used so much energy prepping for the big day. Then there’s the pain, the dizziness and whole host of other symptoms which arise.

And any further activity, however seemingly small, can cause them to flare further. The more they flare the longer the effects will last. So if I push myself to join in a get together one day, the flare up of symptoms will most likely last a couple of days or a week. If I push through that flare up of symptoms and join in another thing in the days that follow, that flare will not only last longer but the symptoms will be more severe too.

Sometimes pushing through is worth it for the memories it makes; life with chronic illness means there is almost always a price to pay for doing things. And if you’re enjoying yourself you tend to forget the time, so do things for longer than you probably should, meaning the “price”, in the form of increased symptoms etc., is higher than it would be if you’d paced yourself more. But as I say sometimes it’s worth it for the enjoyment you get and the memories you make.

This year is different in many ways due to the pandemic, however with the 5 days of the “Christmas Bubble” whereby you can create a bubble with two other households including your own, I suspect there will still be some of that pressure there. I know that although we don’t have any plans fully formed in my family yet, there will be a meal with our “support bubble” at least which will be enough to wear me out. Especially given how iffy my health is being right now; it’s not a full blown relapse or anything like that, but symptoms are already flaring, old ones returning and moving round the house is becoming increasingly difficult.

I know for many this restriction on the number of households that can mix in a “Christmas Bubble” will be a relief, because some of the pressure that comes with the festivities each year will be reduced as a result. And there is no need to feel guilty about that. It is perfectly okay to feel that way, and it’s perfectly acceptable to set boundaries too, especially if you don’t feel comfortable mixing with anyone outside your household during this time. You do you, and do whatever you feel comfortable with in that regard  (providing its within the law!).

I hope wherever you are and whatever you do for Christmas this year, you enjoy yourself, your family are understanding and you can pace yourself as well as the festivities allow.

Happy Christmas and stay safe x

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The Importance of Silence

Silence is an important part of my daily life, to rest properly I need quiet. But I also need silence when I’m concentrating on things, particularly if whatever I’m doing requires a lot of concentration.

I recently had a phone appointment with one of the hospitals I’m under the care of, and right in the middle of it someone came into the room to tell me something. Rather than stopping what they were saying when they saw I was on the phone, they continued telling me whatever it was they wanted to say and as a result I missed an entire chunk of the conversation with the hospital. As it was happening I was trying so hard to concentrate on what was being said on the phone, as well as in the room, and I thought I would manage it, but literally seconds later it was blank. Not only did I blank what the hospital had been saying during that time when someone else was talking to me, but I also couldn’t tell you what the person in the room said to me either; I had some vague idea of what it was about but not the specifics. It’s as if my brain just shut down moments after trying so hard to take in both conversations!

At the time of this I was infuriated. Thankfully I did ask the hospital if they could send me a brief summary of the most important things discussed on the phone so that if I’d missed something really important it would be in there, and they were happy to accommodate that request. But that’s not the point.

However, it wasn’t until a few hours later that I remembered that not everyone has the difficulties I have in concentrating, or managing or following conversations on the phone. To this person, being able to take in a quick sentence about something else from someone else while they were on the phone was actually perfectly normal. But for me it is seemingly impossible.

So, like everything else in my life I thought I would blog about it, share my experience and the things I have to do to have some hope of following a conversation on the phone (and remembering it!) but also just generally being able to concentrate when doing things like watching TV, reading a book, or even typing this blog post!

I honestly don’t know how to properly explain what happens if I don’t do certain things in silence, but basically its as though if there’s more than one thing going on, competing for my attention, my brain shuts down and I can’t concentrate on any of the things going on.

So however troublesome it might be I have to have silence when I’m on the phone, or doing anything which requires concentration. Some examples include:

When the phone rings:

    • If I’ve got the TV on, I pause or mute it. Music or radio? Same thing.
    • If I’m out in the garden and it’s breezy, or other people are talking in the background, I have to go inside and find somewhere quieter.
    • If I’m in the house and people are talking in the same room as me, no matter how quietly, I have to go to a different room.

When I’m trying to concentrate:

    • If the TV is on, I’ll mute it or turn it off – it all depends on what I’m doing and how long it will take.
    • If the radio is on or there’s music playing, it usually has to go off or on a really good day providing it’s the only background noise and what I’m doing doesn’t require too much concentration it can stay on quietly (and by quietly I mean very quietly – my parents say they can’t hear it properly at the volume I can tolerate it on at while concentrating)
    • If I’m in the house and people are talking in the same room as me while I’m trying to do something which requires quite a bit of concentration, like reading a book, no matter how quietly they are talking, I have to go to a different room or stop what I’m doing until it is quiet again.

The truth is that when it comes to activities other than talking on the phone, it all depends on the level of concentration required and how I am that day as to whether complete silence is needed or whether I can cope with a little bit of background noise. For example most days when I am able to do some knitting I can manage to knit while the TV is on, or there is music in the background; providing it isn’t a complex pattern! However, I can only ever read a book when it’s quiet and there is no noise in the background except the hum of the fish filter or heating etc. anything beyond that and my concentration just vanishes so I have to put the book down.

Whenever someone visits, they’ll usually find I turn off the TV, radio or music, if it’s on, despite them saying it’s fine to leave it on. This is because my brain can’t filter out the conversation from the background noise, believe me I have tried. For short conversations I can usually cope, but anything longer than 30 minutes and my ability to concentrate on what is being said vanishes and not only am I unable to follow what is being said and join in the conversation, but it also uses a lot more energy! So if I know someone will be here longer than that I’ll opt to turn off anything in the background so I can participate in the conversation and pace myself better.

On a similar topic the other thing I can find difficult is multiple conversations going on within a small space; for example if we had say two members of my family come over for a cuppa and one is having a conversation about one subject with my parents and the other is talking to me about something entirely different, after a short time I struggle to concentrate and keep track of what is being said to me and think of a response because I can no longer block out the sound of the other conversation and my brain essentially tries to follow both at once and fails miserably! Usually in these situations I just quietly withdraw from the conversation entirely, not because I want to, but because I can’t manage to join in any longer.

I’m sure there are many other things I now do instinctively in order to be able to concentrate on things, stuff which most people wouldn’t think was necessary in order to be able to complete basic tasks. But alas for me silence is necessary, some days it just makes it easier to pace myself; it allows me to do that little bit more than if I had background noise to cope with as well, other days it is necessary if I am to do something which requires concentration. However, for some reason, I assume because it requires so much more concentration but I don’t actually know, I always need silence when I am on the phone if I am to be able to follow the conversation and remember what is said.

 

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