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.”

It is a truth universally acknowledged…

…that I can cope perfectly well at home not going out when I’m not going out because I don’t want to. But the minute I’m stuck at home for the foreseeable for reasons beyond my control I get cabin fever.

Haven’t been out since New Years Eve because of my cold. It’s well on it’s way out had decided to do the full 10 days isolation just in case and was planning to go for a walk probably tomorrow. I’ve been happy at home working my way through a long book and an even longer audiobook and playing games on my iPad. I didn’t really have an enthusiasm for the idea going by the weather but figured I should probably go out occasionally. Then the care agency called last night.

The carers are having weekly covid tests and one of them came up positive. I’ve been identified as a close contact and need to self isolate until next weekend.

And all of a sudden, I’m bored.

Four Months of Isolation

It’s been a fair while since I wrote one of these “life in lockdown” posts and it’s definitely something I’ll want to look back on in future years so here’s another one. I just put the washing on for an extra rinse so we’ll see how far I can get before it finishes.

Monday was 4 months since I was last in a building other than my house (I went to the gym on Friday 13th March). I’ve probably written this before but although the panic buying that weekend would have made it unsafe for me to go out, I probably would have gone to town in the week after for more supplies if I’d known it would have gone on this long. I’m not sure I’d really have needed them but it feels like I should have done it.

Some hints of normality have snuck back in over the last few weeks.

The carers are now coming three evenings a week as well as the mornings. They are trying to keep it to one specific carer for the evenings or someone I’m already seeing in the mornings. They are managing that but having an evening carer really didn’t work very well for the first few weeks. It’s working better now they’ve changed who is coming but they are still turning up really early (several times an hour early) on a semi regular basis which is tricky. I keep changing my mind between just stop it again, permanently this time, keep it as it is and up to it five evenings. I can’t imagine going back to every night right now just because I like the independence.

The supervisor from the agency also came out with one of the morning carers this week to do what I’ve previously known as a spot check. They didn’t do any during lockdown so it was the first one. It’s done slightly differently to previous agencies but it was good to get it done and have a conversation between the three of us of how things are going. I continue to be very pleased with how well it’s working since I changed agencies. If I’m completely honest, as much as I miss several of the actual carers I had before but I wish I’d changed to this agency much sooner.

I’ve visited my parents house and sat in the garden several times since I last updated (and been for a couple of other walks). We had the entire family there for pizza at a distance early in June. I hadn’t seen any of the family other than my parents since then. But yesterday they had Henry for a few hours and I popped up to see him. That was fun to hear his take on things and see him chasing around the garden doing challenges I set him. He has an interesting press up technique and is good at walking like a crab.

The other hint of normality is that a new wheelchair accessible transport provider came last week so I could try getting my chair in their vehicle. That worked better than expected given problems I sometimes have with that. I plan to see friends in a few weeks and I might use them to take me to meet my friends near a local walk (one that I can walk home as part of).

Sadly, there has been some pressure from a few people for me to get back to normal quicker than I am and “balance the risk to my mental health”. In the case of one person it’s felt like no matter what I do, I’m doing lockdown wrong. It’s upsetting and frustrating to have to deal with that. I have a plan for getting more back to normal and am quite happy with things the way they are.

Some of the pressure to get back to normal is made doubly ridiculous because it’s already my normal, it’s not corona fear. The friends I’m seeing in a few weeks, I’m being told I could meet now. But they live a drive away and the date is the first one they could do. Visiting my parents in their garden has been our normal way of doing things for years because it’s easier than being helped up the steps. I basically only go in my parents house if I’m going to be there most of the day or other people are visiting. This is possibly a topic I should blog more about.

Otherwise I continue to read a fair bit (I’m up to 27 quarantine reads I think, must update on that). I’m not reading as much because I’ve been crocheting more though which I’m really enjoying.

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.

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.

Five Things I had Forgotten About Having Carers

According to this blog it’s nearly 9 years since I stopped having carers.  My care package to manage my lymphoedema has been in place for just over three weeks now.  And it’s going well. Most of the carers I’ve met I’ve got on well with (some I’ve only met once so it’s hard to know how I’ll get on with them) and there haven’t been any of the problems I anticipated with getting my wraps applied tightly enough. I am however remembering several things I had forgotten about having carers.  Here are five of them.

1) Your time is not your own. Just because the evening visit is scheduled for 8 doesn’t mean it’ll happen at 8. Officially they are allowed to come 15 minutes either side of the time without letting you know. But that doesn’t account for the times they changed the scheduled time to earlier and forget to tell you.

2) Never make an attempt to finish reading your book or watch a film before the carer comes they’ll turn up as you’re about to finish it when the ending has just got interesting. The same applies for making dinner to be ready not long before they come

3) The actual carers who come out are brilliant but invariable you’ll get annoyed with the people doing the organising because it’s a difficult job filled with bureaucracy and bureaucracy and being able to live your life with support aren’t good matches.

4) Every carer needs a different level of reminders/prompting when doing your care and it’s a really tricky line to negotiate between giving someone enough instruction to do it right and so much they feel you think they’re stupid. It also requires remembering who which applies to.

5) Everyone you’ve ever met has an opinion on you having carers and for the majority of those (especially from those who’ve never had carers themselves) it’s best to ignore it.  The experience of care and how the system works is very hard to describe and it’s probably best not to try.

Say My Name

I’m kinda well known for either not spotting people  I know when I’m out and about or for people knowing me but my having no clue who they are.  To be honest, that second one tends to happen a lot – as a CAB adviser I’m often the only person their someone deals with (plus I stand out because of my wheelchair) but if I’m doing drop ins I can see up to four people in a day.

For slightly over two months my parents (mostly my Dad) were coming in twice a day to do personal care tasks related to some treatment for my lymphoedema.  However on Tuesday this week a care agency finally took over so I’ve been having carers again.

Which is horrible. Because I don’t like being tied to a schedule etc. But nice because so far I’ve got on well with the carers I’ve had and haven’t had any problems. And also great because my parents are really good at supporting me and I appreciated them doing it but my god I think we were all getting a bit frustrated with each other and ground down by it and it was just nice to get a bit of independence back and go several days without seeing each other.

The carers all had to be trained in how to do my care because although they’ve all done compression before, no one from the agency had done compression wraps. And also they needed to be signed off by my lymphoedema nurse as trained in me – specific concerns etc. Because she knows my legs.

So there I was, Friday last week. Sat in one of the lymphoedema clinic rooms at The Churchill.  Lymphoedema clinic doesn’t have it’s own space so it’s squeezed into a corner of the renal unit.  It’s the smallest, hottest room ever and it has no air because it used to be a transplant room so the windows can’t be opened.   The lymphoedema nurse on one side of me and the woman from the care agency who was coordinating  sitting on the other side running down a list of names as a never ending line of carers (12 or 13 were trained) came into the room all at once “This is X, that’s Y, then so and so” etc etc.  When I described it to someone afterward I thought it was a bit like that joke where about a million clowns get out of the smallest car ever. And I said hello to the group of them then pretty much immediately forgot all the names.

I’m slowly meeting the carers and learning names but I think I’m going to spend a lot of the next few weeks looking blankly at people who know me with no clue what their name is.  Still at least they’ll be wearing a bright blue carer uniform as they do it so I won’t be wondering how I know them!

>The Crip and The Casts

>I tried yesterday to post a video blog from my shiny but for some reason it won’t upload.  I will endeavour to cover the main points and do so quickly as I have hospital transport coming and was told to be ready at 9.15 (8.44 now).

Casts went on Monday.  that day was a huge struggle and ended in a crying, shaking, sobbing, puking meltdown that necessitated my calling my Mum round at 11:30 pm and unfortunately getting her out of bed in the process.  Basically I couldn’t get out of bed without help, I got my skirt all tangled up, couldn’t get it up or down and it was catching in my wheels, it was too hot and the casts were a little uncomfortable due to the stretch and when I’d tried to transfer into my powerchair earlier that day hadn’t managed it meaning I thought I’d be housebound.  Mum got me sorted out and left a little after midnight I think.  She came back round at 6am to get me up for the loo again and then I went back to bed (definitely needed the rest!) and Dad came in at 9 on his way to work and helped me up.

We’ve managed to solve the bed problem by putting the mattress from my old bed on top of the one on my new bed which means I have a ridiculously high bed but I can get out of it without help!  The loo I was also finding a little low which is strange as both it and my bed are an easy height usually.  I keep a toilet surround (with bars and a raised seat) at my parents house and my sister dropped that in for me.  Tuesday and yesterday I was able to transfer into the powerchair with help and as I’ve gotten used to the casts have been finding that easier and can just manage it solo now.

When I left the hospital on Monday I was given paperwork with instructions which included going to A&E if I had any problems out of hours (and a letter to take with me).  I’m sure that if I could have found someone to take me I’d have gone Monday night, at the very least I was adamant that I was going back to the hospital first thing Tuesday and kept saying I couldn’t do it.  But it didn’t come to it and it’s been a struggle at times but it’s been OK.

I saw my GP about something else yesterday (for which she gave me some lovely Erythromycin meaning I am once again on two antibiotics) and she told me that the hospital hadn’t even told her they’d seen me let alone that I’ve been multiple times and what they were doing to me.  Don’t think she was best impressed.  I wasn’t surprised she didn’t know all of it as my consultant rang me Monday afternoon to say he’d not made a note of what we’d agreed and what plan had been made for going forward and could I tell him? But i was surprised she hadn’t even had a “we saw Emma for physio and are sending her back to wheelchair services and to the consultant” type letter as I was first seen practically a month ago!

Apparently my casts may come off and stay off today.  This would be if the treatment was complete (unlikely I think based on what was said on Monday) or it was considered to have failed.  I think I knew deep down that it could fail but I’d not really thought about it and considered that.

Yesterday I didn’t need as much help, just my Dad to come in and help me get dressed as I got one leg in my knickers and couldn’t maneuver the other… which was fine as the possibility was planned for and I got up and got washed so I’d be getting dressed at a time he could be around.

It might be early but I’m kinda sleepy – I have some cast protectors but just in case they didn’t work I didn’t try them until this morning.  Mum came and helped me shower but in order to be at work in time had to come at 6.30am.

>A Few Days On

>Not quite a week since I had the botox (tomorrow will be a week) and I think my ankles may be a little looser.  This is a very good thing.  It’s about the right timescale too as the physio said it takes 7 – 10 days to kick in.  I’m not 100% sure that’s the case, I need to get a second opinion from my dad, but it’s looking good.

The first lot of casts go on on Monday.  I’m feeling a lot calmer about that now but it’s still going to be very different and possibly difficult.  I’m just hopeful I get a good result out of this.  As I’ve said to a lot of people this is going to be a long process. It shouldn’t, however, be painful which is another very good thing.

Once I’ve been on Monday I really ought to start sorting out a social services referral as when I’ve got my splints I’ll need carers to help me get them on everyday.  I want to find out what timescale is involved first (e.g. immediately after the casts come off or if there will be a delay before I see an orthotist, if indeed, I need to see an orthotist but I can’t imagine I don’t) and also if these will be day or night splints. The prospect of carers again stresses me out.

I think the problem is that Oxfordshire Social Services provision being what it is I believe it highly unlikely I’ll get anything other than 15 minutes a day to help with splints and all the other things I’ve been struggling with and just about managing and even not doing since my funding was cut in 2007 will be left.  My previous experience of agency carers is that there are a lot of niggles involved and the level of funding I’m likely to get would mean a direct payment is impossible because no one is going to work 15 mins a day.

>Meds and Such Like

>I think it’s safe to say that at the very least I need to go and chat to my GP about my depression.  I’m much better than I was when my antidepressant was changed to Sertraline but I’m still struggling a lot at times.  That said I don’t necessarily think I need it tweaking again but I’m not sure and I need to keep an eye on these things.

And when I went to the physio she was talking about the possibility of changing my muscle relaxants.  Either an increase of my baclofen or taking something else (which said could be instead of or in addition to the baclofen).  I’m back there on Thursday to chat these things through.  That was quite interesting though because I’d not heard of one of the mentioned meds being used for spasticity and I know of loads of people who take it.  And she also queried whether I was taking anti-depressants for depression or spasticity as apparently some anti-depressants can be used for spasiticity as they relax you.  I’d never heard that before but it’s an idea I’m quite interested in.  If I don’t come back without a drastic increase in my baclofen or an extra prescription I’ll be very surprised.

The physio has also referred me back to wheelchair services as she says I either need this chair adapting or a new one as it’s totally unsuitable and she thinks part of the cause of my pain.  Wheelchair Services however are saying I have to go back on the waiting list which has an average wait of 18 weeks.

She also advised me to go back to social services and asked to be reassessed for care needs, specifically for help with socks and shoes.  I’ve not done that yet.

A few other things were mentioned as possibilities so I came back with lots to think about which is part of the reason I’ve been so quiet on this blog.

Oh and she told me I should be leaving my wheelchair in a different position (equivalent to where it would be for a lateral/slide board transfer) when I’m standing and transferring.  Getting the hang of that is not proving easy at the moment!