The Most Supportive Thing

I wrote an entry a while ago about blog posts I’d been wanting to write (I’m really good at starting things…) this is part of one of the posts, there maybe a part two at some point but not any time soon.

Last week (before the phone call about self-isolation) I had a problem with the carers. No one turned up to do my call and then when I eventually tried to call them to chase it up (much later than I should have because I kept thinking “someone will come soon”) I couldn’t get through on the phone, repeatedly. Once I did manage to get hold of them it was really quickly sorted.

And I appreciated three things about it.

I was grateful that in almost 11 months with this agency this is the first major problem like that – and the first time I’ve had to chase where a carer is. I’ve previously had to chase other agencies on practically a weekly if not daily basis.

I really appreciated the carer’s honesty when, after coming running up the path to my front door, she said “sorry, Em, my fault.” Because that takes a lot of guts. Particularly when due to care being confidential she could have just not mentioned it or said something non-committal like “been a bad morning.” And I used to catch the care agency before in stupid little lies about stuff like that all the time. But I did also have to wonder when she started calling me “Em”.

But what I really really appreciated was that when I sent a letting off steam message to a friend of mine saying “Argh carer’s over an hour late and I can’t get hold of the agency.” she sent the perfect message back.

It said: “Argh.”

One thing I’ve struggled with, particularly since starting to have carers/wear compression, is people wanting to solve my problems. I’ve had a lot of people getting angry on my behalf about things. Trying to justify to me or explain why things have happened. Tell me I shouldn’t let things annoy or upset me.

I do realise that it comes from a place of wanting to help me, trying to be helpful. And perhaps it’s how they would like to be supported if they were in that situation.

But whilst I am grateful to have people who wish that for me and have been trying to help. Sometimes I just want to rant, to let off the steam. It feels like nobody wants to be the one to do this – I think it makes them uncomfortable to sit with people in their painful moments – but sometimes I don’t want a solution or people’s anger or justification. I just want to tell you something’s happened that’s upset me.

I’m not just talking about problems with my care here but life in general. But sometimes the most helpful, supportive, useful thing people could do is let me tell you it’s shit and just hear me. All you have to say is “yeah it is.”

Random Bullet Points of Quarantine-ish Life

I have been meaning to write a blog post for ages. And as always I’ve started writing a couple and not posted them. So here is a post of Random Bullet Points of Life, written whilst waiting for a carer.

  • I’ve been advised that it’s worth me started to look into a new powerchair. I’ve trialled the one they recommended three times (I trialled, then when the tech came back to work on my Jive and brought it a second time as the weather was better and I could have a longer go, then it turned out I’d have to have a different seating type if I got a seat riser so they brought one with that seating – but no seat riser – for me to try). It’s not a terrible chair but it’s different. And right now I’m not loving it. So that’s on hold but at least I have an idea what I might get and if I get to a point where I need a new one suddenly we aren’t starting from scratch. We’ve also been able to 100% rule out my getting powered elevating leg rests (something which has been being debated whether I needed since my lymph treatment started) which is very helpful.
  • I went to lymph clinic three and a bit weeks ago. It went ok, not exactly what I would like to have heard but nothing to worry about. And probably now I think of it, not entirely unexpected.
  • The new taxi/support company I mentioned in an entry a while ago took me to clinic and then dropped me in the centre of Oxford for two hours before bringing me home. I zipped through the shopping bits just to see (but didn’t go in any shops) and then went for a long walk through Christchurch Meadow. It was so nice to be somewhere different and walk in different surroundings
  • Just over a week later they took me back into Oxford to University Parks for a long walk. Again it was nice to get out of Didcot and see some different things. I haven’t been to University Parks since I did Race for Life there in (I think) 2008 and I didn’t remember much of it.
  • I took a lot of photos on those two walks which I think will be source/prompt material for my probable NaNoWriMo project this year. I’m feeling very inspired.
  • Last week I went to Millets with the same people and this time they supported me to do my shopping. I bought a few plants, some bits in the farm shop and because it was too wet to go see the animals, we had a jacket potato in the restaurant. It was lovely and it was nice to eat out for the first time in so long although really I’d have rather gone somewhere for a more interesting meal. I think that will be the last time they take me out for a while although I had hoped to do a couple more. Certainly the weather forecast for this week puts paid to all the places I’d thought of going, even if I wasn’t concerned about the increased risk with rising cases of Covid-19.
  • This last week the carers have started coming every evening again. I’m not sure if this is temporary or if I’ll cut it down a bit again – I have some new stockings (and am getting a different wrap for one of my feet) and there was concern if I’d still manage independently with those so we put the calls back in.
  • About five weeks ago the carers also started coming an extra time on a Tuesday to do my cleaning. It’s working very well and although more expensive than my last cleaner (she had only just started when lockdown happened and wasn’t really working out), it was much less than the agency cleaners I had. The really good thing about is that if we lockdown again they can still come.
  • I’ve seen friends (the same ones) a few times and family once or twice (my parents more often). My mum came round to watch Fame on YouTube and work on our crafts this morning. So I am getting some socialising in.
  • I’ve done some CAB stuff – R&C, not advising – from home in the last week or two. I am not good at working from home!

Value for Money

One of my carers has asked me about two things I’ve bought lately (a stocking aid and some cloth masks) and specifically how much they’ve cost. When I’ve said “about X pounds” she’s said that’s very expensive.

I’ve been thinking about that a lot since we had those two conversations. I think she’s wrong. But only because of the bigger picture.

The mask conversation was almost irrelevant. She’s told me how much she paid and said delivery was more. I didn’t pay delivery. Hers came from somewhere abroad (I forget) and took ages to come. Mine were here in a few days, from (I think) London. She wasn’t comparing like from like, even before you get to the fact that knowing it’s difficult to make a fair amount of money as a crafter, I was prepared to pay a bit more.

The stocking aid (one specifically for taking them off) was £22.40. Although I just had to look that price up and had told my carer it was “about £20” I thought that was very fair, particularly given that as soon as you put the word “disability” on anything it goes up in price and that the market for stocking aids must be a niche market within that already niche market.

But.

I’ve spent the two and half years since I started wearing compression hating having to have the carers twice a day. Hating the time I lost and the tie of always having to be home/free/awake at those set times and feeling like who I was, Emma, was getting lost in the wash of the woman with lymphoedema who needed this doing to her. It had a real negative thing for me and was part of the reason why my mental health was in such a downward spiral when I started needing compression.

Everyone who knows me and my history and my level of mobility (and the amount of problems I had when I used to wear normal socks let along compression stockings) was sure that there wouldn’t be a way of my getting them off myself. The lymphoedema nurse thought getting the stocking over my heel was going to be an issue.

Eventually coronavirus hit and the risk of my injuring myself trying to get my own stockings off was less than the risk of having the carers here twice a day so much. Very long story short: I got one in the hope I could go to once a day calls, it worked. It took some trial and error to find the easiest way to do it and it takes ages (but I’m getting quicker!) and in two and a half months I’ve probably had support to take my stockings off less than ten times.

Starting next week I am actually going to have a carer three evenings a week because applying my cream myself is still tricky and I think it needs doing better more often than the once a week or so Dad was doing it. But I don’t currently anticipate going back to having a carer here twice a day, everyday.

Should life ever go back to normal there will be no more leaving things early to be home for the carers or planning how I will manage to get my compression off if I go here. Or not going to things because I can’t work round an evening care call. Without being able to go out I’m already eating dinner when I want, sitting outside losing track of time for hours of an evening. Once the morning carer goes, my day is completely my own. I’m thrilled with that.

My carer has looked at it and seen a simple looking thing I can use to take my stockings off. But she’s missing what my being able to take my own stockings off means to me. And £22.40 strikes me as amazing value for money for something that’s changed my life.

Realistic

I’ve been thinking a lot over the last week or so about how having a chronic condition or disability shapes your thinking and how this can be taken by those who don’t have the same experience (this is a topic I thought I’d written about follow a similar incident back in 2017 but I can’t find a blog. Which suggests it may have been a social media rant and lost to the abyss).

When I went to lymphoedema clinic recently my legs were still the same size as when I was last seen in clinic in March. And the specialist nurse I see told me that she thinks it’s likely the swelling has reduced as much as it’s going to. No one is saying it’s never going to get any smaller, but the thought is it’s now unlikely and the goal for next time I go to clinic is for things to still be the same – i.e. stable. Which given that heat is known to make lymphoedema worse and when I went last summer my measurements were worse than the time before would be a huge thing.

I’ve known since the very first time I went to clinic in November 2017 that they didn’t expect to be able to completely resolve my swelling and that whatever happened I would need to wear compression for the rest of my life to maintain it. And as much as several of my carers told me how much smaller my legs were and how I was “definitely going to need smaller wraps” in the week or so before, I thought things hadn’t actually changed and I was half expecting this to be the outcome.

I’m fine with it. Things are so much better than they were before I started wearing compression, and I could never have imagined things would have improved this much. If this is it, so be it. I’m more comfortable, transfering easier, significantly less risk of complications and skin breakdown. Time to figure out what maintenance looks like (I’m currently being told I’ll need the same level of compression but my previous nurse told me last year she thought it might be a tiny bit less so who knows).

A few people have heard this news and immediately been pushing me to do more. Telling me how I shouldn’t give up and that I can “prove the lymphoedema nurse wrong.” even when I say that actually I’m fine with this and I don’t want to prove her wrong because this is better than expected one person pushed me again “so, you’ll prove her wrong again.”

But my sitting here saying “this is OK, I’m not bothered if things don’t get any better.” isn’t me giving up, being pessimistic, or negative or any one of a thousand words that me and my disabled friends all have stories of being accused of when we say we don’t want to pursue a cure or can’t do a particular thing, or think a treatment isn’t for us.

It’s me being realistic and recognising that I have done absolutely everything I can and that I’ve been advised to do to manage my lymphoedema. It’s the recognition that the things I could maybe do more of might not achieve any further reduction and if they do are unlikely to improve my quality of life any more.

I realise that everyone is just trying to encourage me and be supportive (and it is people who don’t know me too well who have made the comments). And I know it’s my having lived with CP my whole life that shapes my thinking like that which is perhaps why it’s hard for some people to understand it. But I felt like all the “you can prove her wrong” type comments were putting pressure on me I didn’t need and weren’t what I needed.

As all three of the members of the team I’ve seen have told me managing a chronic condition is a balance and I need to find a way to live my life whilst navigating all it takes to manage multiple disabilities. And that means being realistic and not being upset if I go to clinic next time and things are still stable. Not putting my life on hold whilst waiting for a new treatment, or even a cure that may never come.

Jinxed it!

I wanted to write a post about how proud of myself I am about something. I’ve been telling everyone about an achievement since last weekend.

Unfortunately telling them seems to have jinxed it!

My care package has been in place for a year now and not once have them come and found me still in bed or in the shower. I’ve always had a set of wraps ready to wear and I’ve never been having a “crap I have no clean clothes” or other major crisis. I have been only part dressed or just in a towel a few times but that’s usually down to their changing the time and not telling me.

They’ve never come so drastically late that I’ve had to abandon waiting for them or decline my care to get to things I had to do (It came very close once when I had a doctors appt an hour and a half after they should have left) They have interrupted my dinner in the evenings a few times though!

I’m really proud of myself that I’ve managed a year of this. Of getting up early than I’d like (or naturally wake) and of dealing with the tie having carers represents.

Then on Monday night I was telling that carer. “It’s been a year and I’ve never been in the shower! I’ve never had to miss out because they’ve messed up!”

Tuesday the app the carers use glitched and they ended up over an hour late to me. My lift to physio was outside as we were wrapping up.

Yesterday as that carer left she said “I’ll see you tomorrow morning, I’m coming at 9”. And the rota I received at the end of the last week said the same thing.

This morning I took advantage of that and had a 30 minute lie in. Which meant when one of my other carers knocked on my door at 8:30, I’d been out of the shower less than 5 minutes. I was wrapped in a towel with a bundle of clothes I was about to put on in my arms. As I tried to juggle those and my keys to let her in I dropped my knickers. Luckily she wasn’t phased by either my lack of clothing or my “good morning, could you pick my knickers up please?”

I am still really pleased by what I’ve achieved but I’m going to stop talking about it before they come on Sunday and find me asleep.

A new chair

I’m getting a new manual wheelchair provided by the NHS.

I had an assessment with a rehab engineer and an OT today.  There was some discussion and after a few minutes I said “So I am getting a new chair then?”

And the engineer who is someone I’ve seen in clinic before said “Emma, the only reason we’re letting you go home in that chair is because we don’t have anything here to lend you and we can’t send you home without a chair. If we had something else you’d be in it.”

They also got a new type of cushion out for me to try and the OT declared she didn’t want me taking my old cushion home so sent me with the trial one. That’s a Qbitus Q-Care Integra 2. I’m to ring her tomorrow and say if I want to keep using that or to have a new one the same as I had which was a Jay 2 Deep Contour. Currently undecided on that.

So I’m getting an Invacare Action 4 – this is next one up from the Action 3 I’ve had since 2009 but looks all but identical. The change is due to my weight. I will have new lateral supports and solid back, identical to what I have on this (Jay J3 backrest). Something was mentioned about a higher back but I lost track of what was decided. Slightly deeper seat and elevating leg rests in the hope that will help with both spasms and lymphoedema.  It’s coming in my preferred black.

I knew my chair was desperately showing it’s age but it was working. I had been relatively sure my cushion had had it.  But I really hadn’t expected them to be completely horrified by the state of things.  It’s been made very very clear by both of them that I need to be keeping in much better touch with the hospital based wheelchair team and that this replacement should have been done about a year ago. Although I did tell them that last summer I saw one of the mobile team for a repair and commented about a new one but he basically said budgets meant they didn’t get replaced until they couldn’t be repaired.  

I’m very excited for my new chair – they are marking the order as urgent but no one is sure if that will make a difference. Still hopefully by August I will have it.

Random Bullet Points of Life

For the small things worth mentioning but probably not worth a blog entry of their own

+ The furosemide for my lymphoedema is working and my feet are improved. Still obviously swollen but less so and my trainers fit better (but are still out of shape). I’m pleased. Blood test tomorrow to check the meds haven’t messed up my kidneys (and at my request check my iron)

+ I got sailing for the first time in several weeks last night. I really didn’t think I would based on what they were saying in advance about the weather but I was bored so we went to see. Even when we got there I wasn’t sure but the wind dropped down and I got out for about 45 minutes. It was good. I took a couple of pics to do a “spotted at the sailing club” entry but when I looked back at them they weren’t great. I put them on my instagram though.

+ I’ve been trying to do more with instagram actually rather than just taking pics and doing nothing with them after I accidentally lost loads of pics a while ago – wiped what they were on thinking I’d backed them up to my PC then discovered no they weren’t. I’ve got several pics I love on there.

+ For the first time in ages I went looking for a new layout for this blog and found one I really love.

+ My sister’s hen do is this weekend. I’m looking forward to it.

+ Bake Off started again this evening. I liked it. Part of me would like to see about going to a filming of An Extra Slice again, especially as it’s now being filmed at Waterloo so I could take my powerchair. But I won’t because they were rubbish at access when I went (didn’t have wheelchair spaces as such, made my friend sit separate to me and kept asking me to transfer) and I mostly just want to see an episode before everyone else again.

It’s Okay

For me blogging is an outlet. And it’s a pretty good one.  I’m generally very open in what I share about myself although I try and protect other people’s privacy.

I’ve been blogging for fifteen years and in that time how and what I share has changed.  I’ve been quiet on my blog lately because that seems to be going through another change. Not really a welcome change. I welcome comments and questions and responses to my blog – the majority of which come through twitter nowadays. That’s brilliant. But there are some people who seem to read a completely different story to what I’m writing – One time someone took a mention of a medication to mean I was really ill and sent an email they were coming round to look after me. Luckily I was able to stop them. I don’t want to stop people reading my blog but it’s stressful if stuff like that happens.

So I haven’t felt as comfortable blogging. Almost as though I’m losing my blog because it can no longer be my outlet. I hate that and I don’t want it to happen. And now I have a piece of news that previously I’d always have shared. I want to share it but before this happened I told a friend I thought it would happen. It’s not upsetting news but as we were sat having our drink in a crowded cafe they cried.

I was diagnosed with lymphoedema this week (NHS choices link). I’ve been describing it as a complication of my having CP but it’s more accurate to say it’s a complication of my being a wheelchair user. I just have the swelling.

I’ve had obvious oedema in my legs for years – even in the winter although it gets worse in the summer. And this year it seems to be a lot worse and several people have raised concerns to me and suggested I needed to see a doctor/get meds (it was my saying I thought I might need meds that upset my friend). I wasn’t that concerned because I pretty much knew that it was a wheelchair thing. But it was bad and it was getting stressful with all the reactions so I did go to the doctors.

She diagnosed it as lymphoedema and said that as it’s not life threatening and it doesn’t usually bother me there was no need to treat it if I didn’t want to. We talked about my options and at the moment I’m declining the referral to a specialist for various reasons. I am however having a month’s course of diuretics (40mg of furosemide daily). The dr isn’t sure it’ll work for it but said it’s worth a try. If it does work I’m going to have a second month of them. So far I think they are making a difference but it’s too soon to know for sure.

Having lymphoedema isn’t a good thing. But it’s also not a bad thing. I need people to understand that. I’ll probably have it to some extent for the rest of my life. That’s the luck of the draw when you’re in a wheelchair all the time. And that’s fine. I have meds, I have choices and I’m happy with how things are. It’s okay.

I’m going to tell you this. Dealing with it is probably easier for me than writing a blog about it.