How we’re coping

I thought I’d write a little update on how my family are coping with social shielding. Overall we’re doing well & our spirits are good.

My parents & I are shielding together at home. My older brother is social distancing alone at his house & my younger brother is social distancing with his girlfriend & her parents at their house. I do feel lucky that we don’t have any children to entertain or elderly relatives to worry about.

The three of us have spent a lot of time cooped up in hospitals together before so this isn’t an entirely new concept for us. We are definitely all relieved though that we’re in our home environment this time. We also have really strong relationships so are not getting on each others’ nerves too much or arguing, in fact I’m quite enjoying us all spending so much time together.

In terms of practical help, we’re very lucky. One of the village shops delivers us the newspaper each day, my PA who lives close by is keeping us topped up with fresh bread & milk and collecting my medications, my older brother is getting us any other supplies we need & we’ve managed to sort out supermarket food deliveries. The village butchers is also doing deliveries. I’m getting food boxes from the government which are really helping us out. We are disinfecting everything before it comes into the house.

I’ve always been quite a selective/picky eater due to my complex medical history & autism but this is definitely something that had been getting worse recently. I’m still not eating or drinking a wide range of things but I have managed to be a bit more relaxed with brands & types of food & drink while it’s difficult to get particular products.

Regarding socialising, I feel very lucky that I’m not shielding on my own. I’m not comfortable making phone calls but have been making use of technology to keep in touch with people & have even braved a couple of video calls with my older brother. We’ve also had a couple of chats with us sitting on the bench by the front door & a neighbour, my PA or my older brother sitting on a chair more than 2 metres away on our front lawn.

I’m quite used to not leaving the house for long spells but am pleasantly surprised that cabin fever hasn’t set in yet. My parents are each taking Fluffy Thing out once a day for a walk somewhere quiet where they won’t meet other people. The nicer weather has also meant we’ve been able to take advantage of spending time in our back garden.

Speaking of Fluffy Thing, he’s been a great comfort & distraction during this uncertain period. He also seems to be listening to me more which is lovely, I do hope it lasts.

I actually seem to be finding the current situation quite good for my mental health. I’m used to being stuck inside & not able to do much but this time I don’t feel like I’m missing out on things because no-one else is doing much either. And I’m putting less pressure on myself as I have no deadlines to do jobs by so if I have a worse day it doesn’t matter, I know I don’t have any plans for the next day so I can just do whatever I hoped to do today, tomorrow. And it’s nice not having to attend any medical appts or make sure I have to be awake by a certain time for blood tests etc.

I’ve recently had a better spell of health so have been able to do more things around the house in order to keep myself entertained. In fact I don’t think I’ve felt bored at all. I hope to write another post soon with some pictures of what I’ve been up to.

I had intended to put some kind of routine or structure into my days but my variable health doesn’t allow for that. However I have written down a short list of categories of activities & I try to do at least one thing from each category each day. And that seems to be giving me moivation & helping me make my days feel productive. I’m not beating myself up if I can’t do much some days though.

I really hope none of this sounds like I’m belittling the struggles of others because I know lots of people are finding times really tough. I just wanted to reassure my readers that we’re doing ok.

Thanks as always for reading. If you enjoyed this post &/or any of my previous ones please consider sharing my blog as I’d love to gain more readers. Take care x

Introduction to Fluffy Thing

Hello, this is Fluffy Thing. My humum Molly said I can write a guest post on her blog. She also says my spelling is hard to read so she’s helped me with that. I thought I’d take the opportunity to introduce myself, so here we go!

Name: My humum says I’m not allowed to tell you my real name because this is a public blog & my name is quite unusual. I also get called all sorts of other names but tend to ignore them. And I know they’re not my names but I also answer to “food” or “dinner” 😋

How old are you? 5 & a half. And the half is very important!

What’s your favorite food? I eat anything & everything. I especially like meat (pre-prepared or caught by me) & fish, cheese (although I’m not allowed much of that after we discovered I’m lactose intolerant!) & Brussels sprouts. I also like carrots, all green veg & when it’s the right season I pick myself blackberries.

What are you scared of? Nothing, I’m bomb proof! I even tried to take on a fully grown swan once. I have no fear.

Favourite toy or thing to play with? Cuddly toys, knitted objects, shoes or brushes I’ve stolen. I don’t care much for dog toys apart from Moose & don’t see the point in balls.

Favourite things to do? Run around off lead. Eat. Chasing small animals is also good fun. Oh & I mustn’t forget barking!

Least favourite thing? Getting wet! And I don’t like being brushed either.

Have any other furry siblings? No, which is good because it means I don’t have to share anything!

How do you feel about the vet? I like meeting other dogs in the waiting room & marking the reception desk but the actual vets are mean.

Do you like water? Only to drink. My humum finds it funny that I go out of my way to walk around puddles.

Where do you sleep? I don’t use dog beds, I prefer a sunny spot during the day & a sofa or bed at night.

Do you go to a groomer? Yes & I hate it because they make me have a bath! My humum is threatening to groom me herself while we’re on lockdown, eek!

What’s your best trick? I don’t do tricks. I only do basic commands if I can see that my humum has a treat in her hand! Otherwise, no chance!

Who are your best friends? My human family, any other humans who have food & any dogs I meet who want to play with me.

Do you like car rides? Yes as it usually means we’re going for an exciting walk where I can run around off lead.

Do you snore? Sometimes but my humum says it’s cute.

I hope you enjoyed getting to know me a bit better. Hopefully Molly will let me post more in future. Ah yes, I mustn’t forget to include a cute photo of myself…

Feeling helpless

I had plans for my next blog post to be more positive but that’s had to be put on hold for the time being because something that’s been bothering me for a while has come to the forefront tonight & I feel that I need to write about it. This has got nothing to do with coronavirus & the current situation.

My health conditions & disabilities don’t define my life but they definitely make up a significant part of it & have done since I was a baby. As a result of this some of my closest friendships have been made with people I’ve met during hospital admissions or appointments or with people I’ve ‘met’ online who have similar shared experiences. I often find I have more in common with these people than with my peers who have only ever known good health.

I treasure these friendships immensely & really value the understanding & support I get from friends who truly understand part of what it’s like to go through what I’ve been through.

Due to the majority of my friends having disabilities, complex medical conditions &/or chronic illnesses, at any one time quite a few of them can be very ill. And several of my friends have died young.

I usually put on a brave face to the outside world but in reality I find it really difficult. Life seems very unfair & I struggle to get my head around this. I miss friends I’ve lost, I worry about those that are seriously unwell & I feel awful that I can’t do anything to help.

I’m not really sure why I wrote this post but maybe getting my thoughts written down will help a little. I’d love to hear any suggestions that might help me but I know that in reality there aren’t any magic answers. I make sure my friends who are struggling know I’m there if they want to ‘talk’ & send messages & post when appropriate but I wish I could do more x

Edited to add: After reading the above back to check it through that last paragraph makes me feel selfish & guilty for asking for help/support when I’m not the one suffering, it’s my friends that are & they need help far more than me.

How I really feel

Content warning: This blog post contains talk of coronavirus, fears, being vulnerable, death & more. I completely understand if you choose not to read on to protect your own mental health.

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I think I may have given the wrong impression about my state of mind in previous blog posts but I’m trying to be more open & honest so here goes…

I’m not concerned about self isolation/shielding but I am afraid of coronavirus. I’m immunosuppressed so am extremely vulnerable. And my parents are both around 70 so they’re vulnerable. I’m definitely more likely to catch it than your average person & all three of us are more likely to have complications if we do catch it.

I don’t like to discuss politics but the current conservative government have done so much harm to our NHS that now, as the cases of coronavirus rise, there isn’t enough equipment & staff to be shared amongst all the patients.  If decisions have to be made about who receives care & treatment then people with the highest chance of recovery – young healthy people – will be prioritised. And so, to put it bluntly, those of us who have underlying health conditions or are older may just be left to die. And as one of those people, that terrifies me.

I know that I’m unlikely to live into old age but I’m not ready to die yet, I’ve still got so much more I want to do. And when I do die I want to be comfortable & with my family, not feeling like I’m drowning & alone.

I’m sure that I’m not the only one who feels like this so I’ll share how I’m trying to manage my fear. I can’t control much about this situation but when it comes to the things I can control, then I’m doing my best. Together with my parents we’re taking as many precautions as we can to stay safe & that’s all we can do. The rest we have no influence over so I’m trying not to waste precious energy worrying about it. Keeping busy & distracting myself seems to be the best technique I’ve found so far.

Thank you for reading this. I’ve got some more upbeat posts planned about how we’ve been managing self shielding, how I’ve been keeping myself occupied & more, so please keep an eye out for those.

A jumble of thoughts about the current pandemic

A few of my friends in the chronic illness community have mentioned how frustrated they are getting with normally healthy people complaining about being isolated at home for a couple of weeks when we regularly experience it for longer periods. I can understand why they might feel like that but personally I don’t feel the same. I believe it’s all relative & how we view things is based on what we’ve experienced in our lives. For some people being housebound for two weeks will be a total shock to their system & therefore they have every right to talk about it, even though we may not feel the same.

I am however getting frustrated when hearing about people ignoring the social distancing advice & mixing with others unnecessarily. They may feel that they’re invincible but they are putting the lives of those of us who are more vulnerable at risk. Luckily though these selfish people seem to be the minority.

There’s been a lot of media trying to reassure healthy people by saying that coronavirus is only a risk for/kills those who are elderly & with pre existing medical conditions. That’s all well & good if you are one of those healthy people but they clearly haven’t stopped to think about how hearing/reading that feels for those of us who are at risk. It also seems to be suggesting that the lives of the elderly & those with pre-existing medical conditions are less valuable than those of healthy people & that’s certainly not a message we should be spreading.

On a more positive note it’s been lovely to hear about all the acts of kindness that are being carried out to help one another during these difficult times. There have been a huge amount of offers of help & support on my village’s Facebook page & I’ve been hearing of new initiatives springing up all over the place. In my village some of us are putting rainbows up in our front windows for children to spot on their walks round the village while they can’t play with their friends.

It is interesting to observe how the world is changing to cater for so many people being stuck at home. For example more companies are allowing working from home, lots of educational resources are being made available for free for children not attending school, cafes/pubs/restaurants are starting to offer take away options & free local deliveries… This is definitely a good thing, but it’s a shame that these options aren’t regularly available for people who are housebound due to long term illness. Maybe this will make people more understanding & supportive in future.

I want to do more to help & support other people but don’t know how. I’ve put messages on social media letting people know I’m available to talk, I’ve reached out to lots of friends to check on them, I’ve written a couple of blog posts… I can’t speak on the phone (it’s an autism thing) so having phone chats with lonely people isn’t an option & I don’t want to send cheerful post as I fear that could be an infection risk.

I could try to write some more blog posts if anyone has any suggestions for content that would help them at this time. What about ideas for activities to do while housebound? Or my tips on how to help your mental health during a period of isolation? I have experience due to my chronic illnesses & would like to help. Or I could write some completely unrelated posts as a distraction. Just leave me a comment & let me know what you’d like to read. I have friends who vlog but I don’t have the confidence to do that so any future blogs will remain in this written format.

I’m also trying to think of other things I can do to make me feel productive because I know that helps my mental health. Today I’m helping my mum out with her to-do list & have also asked her to choose some beads from my collection so I can make her a pair of earrings for Mothers’ Day.

Being isolated at home with my parents is going ok so far. We’ve got people helping out with supplies & we’re not getting on each other’s nerves too much – yet! I’m also enjoying spending more quality time with my parents & hope to get a bit more structure to my days to allow more of this. And my parents are keeping sane by taking Fluffy Thing out (to deserted locations) for his regular walks. I’m still feeling really positive about things which is good. I just hope it lasts! I’m making a special effort to avoid things which may bring my mood down because I fear if I let that happen then I may struggle to boost it again.

Trying to disinfect everything (letters, parcels, food…) that comes into the household seems to be the biggest challenge at the moment. Doing this may seem extreme but no-one seems to know for sure yet how long Covid 19 can survive for on different surfaces. I have had to step back from helping disinfect things as I was expecting my parents to do everything faultlessly in terms of what they did & didn’t touch at different points during cleaning things. But they’re human so that wasn’t happening & we were getting frustrated at each other. So to help our relationships my parents are the only ones who do that now. During this period of living together in such close proximity it seems important that we all make compromises to get along more smoothly.

Thank you for reading if you’ve got to the end of my rambles. It feels good to have got those things down. Take care everyone x

Keeping safe

This isn’t going to be an information post about coronavirus because I’m not a medical expert & there is already a lot out there. This will just be a personal post about what I am currently doing to keep myself safe based on my individual situation.

As you are probably aware I am immune suppressed as a result of being a transplant recipient & I also have multiple medical conditions. A few of these mean I’m at ‘high risk’ for or ‘vulnerable’ to coronavirus & I’m aware I’m both more likely to catch it & more likely to have complications if I was to, than the majority of the population.

Disappointingly I’ve not (yet) received any advice or guidance from any of the medical professionals involved in my care as to how best to keep myself safe so based on what we know my family & I have been making & then regularly reassessing plans of action over the last few weeks.

Initially we reintroduced the washing hands whenever entering the house guideline that we used initially after my transplant. We’d never officially stopped it but had become lax. So we (both household members & visitors) started doing that. We also became stricter regarding not letting people who were unwell into the house. We became more cautious about washing/cleaning our hands when out & about and returning home.

As coronavirus became more rife we started to be selective about trips out & who we let into the house, which I’d call social distancing.

Then just a couple of days ago we decided to go into self isolation. I know some people have trouble knowing whether or not to do this but for us it seemed a very clear decision to keep both my parents & me (but mainly me) as safe as we could.

My parents & I are now socially isolating ourselves until the worst of this pandemic passes. My younger brother who is still socialising is staying at his girlfriend’s house & my older brother who is working a job where he interacts with the public is also staying away. We’re not allowing anyone else into the house or making contact with anyone at the door. We only leave the house to walk Fluffy Thing & when doing that we use one of our private vehicles, take him somewhere very quiet, keep away from other people & wash hands thoroughly on returning home.

Luckily we have some very kind neighbours & local friends. A neighbour gets the paper for us each day & a couple of other friends get supplies for us when we run low. Anything we receive is left on the front bench & then wiped down with disinfectant wipes before being handled. We’re also not doing any unnecessary online shopping.

To some people our current way of living may seem extreme but our lives are precious & knowing coronavirus is a real risk for us we will do what we can to protect ourselves.

Luckily we’re a close family unit & due to numerous hospital admissions I know we can manage being cooped up together for long periods. I’m also well practised at being unable to leave the house. I’m not naive, I’m sure this this social isolation won’t be easy & we will encounter hiccups along the way, but I’m confident that we’ll overcome them together.

Finally I’d like to send well wishes to everyone who reads this. I hope you’re able to stay safe & keep well during this worrying period. Despite everything I’m feeling positive & know that the sun will shine again.

I’ve tried to reach out to those of you I know personally to offer my support. And for anyone else reading this please leave a comment if there’s anything I can do (from afar of course) to help you, no matter what your situation is.

Antibiotics and more

For a while now I’ve been wanting to write some posts focused around specific topics but I can’t put the ideas & words together as I’d like to at the moment. So rather than making myself stressed about that I’m going to wait til I’m finding things a bit easier cognitively & in the meantime thought I’d just write another general update.

So… what’s been happening since I last published a post?

Firstly, coronavirus is something that just can’t be ignored at this current time. This is a topic I wanted to write more on, from my perspective as someone with pre-existing medical conditions, but for the time being I’ll just say that I’m trying to keep myself safe & leave it at that. And of course my planned Disneyland Paris trips are all up in the air at the moment as a result which is affecting me mentally as I find it so important to have things to look forward to.

I’ve now recruited a second PA who is due to start next month & work the days that my current PA doesn’t. Things have been continuing to go well with my current PA & we seem to be a good team. We’ve recently completed a much needed declutter & tidy of my bedroom so I’m hoping to take the long promised photos of it soon & share them in a future post. I always thought to be friends with someone you had to have lots in common but my PA & I are complete opposites yet still get on well.

I had to buy myself a new pair of glasses last month because despite looking after them well my current pair were falling apart as I’d had them for many years. I’m really pleased with the design of my new glasses but my bank balance has taken quite a hit. I don’t buy expensive frames but like to have nice ones & have a very strong complex prescription so new glasses aren’t cheap.

A couple of weeks ago I had a LLETZ procedure at my local hospital to remove pre-cancerous cells from my cervix. Unfortunately the immunosuppressants that have to be taken after a transplant (to prevent your body from rejecting the new organs) increase your chances of cell changes & cancers. Hopefully mine were caught in time & I won’t need any more treatment but I’m waiting on the results to know for sure. The day of the procedure was a complete fiasco but the procedure itself was really straightforward & painless.

As you may know I’ve had chronic abdominal pain for almost 12 years now. I’m not sure of the exact cause but I suspect it’s due to multiple factors, one of which is something called small intestine bacterial overgrowth (aka SIBO). The colon contains lots of bacteria but in the majority of people there’s something called the ileocaecal valve between that & the small intestine which keeps the bacteria in the right place. When I lost most of my small intestine at 6 months old I also lost that valve & when I received my transplant it wasn’t included, so I don’t have one. Therefore in my case the bacteria in my colon also colonises my small intestine causing pain & other unpleasant gastro symptoms (wind, bloating, nausea, diarrhoea…).

The treatment for SIBO is antibiotics, usually long courses which involve rotating 3 different antibiotics. I’ve tried this a few times previously to try to get on top of my bacterial overgrowth but always gave up part way through due to the side effects of the antibiotics. But with my abdominal pain continuing to be very debilitating I was determined to give it a real shot.

I saw my transplant team last month (another fiasco of a day but the actual appt went ok), together we made a plan & I started taking antibiotics 4 weeks ago. I really want to complete this course of treatment but I’ve had multiple unpleasant side effects so far which have made me feel awful. So we’ll have to see how things progress.

My sleep is all over the place at the moment (which isn’t uncommon for me), hence me writing this at 4.30am. I want to check it for errors before publishing it though so when you see this it’ll be later in the day.

Thanks as always for reading.

P.S. On a lighter note – did you know that you can say Covid 19 to the tune of “Come on Eileen”? Now you’ll never read or hear it in the same way again.

Much needed update

Apologies for the delay in updating, I hope I didn’t worry anyone. I just seem to have had a lot going on.

I plan to write a blog post all about the process of applying for and being granted care from social services but I want to get that right so it might be a little while coming. Things are going much more smoothly now I’ve switched from using an agency to employing my choice of PAs with direct payments & I’m beginning to discover how beneficial having personal assistants will be for me. I’ve got one amazing PA so far & am currently in the process of interviewing for a second.

I made it to see Mika in concert for the 8th time in November & my dream of meeting him finally came true. He was lovely.

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I decided to stop my Acceptance & Commitment therapy appts after about 4 or 5 because I felt I’d gained as much from it as I could. I’ll be returning for a review in 3 months time & then hopefully I’ll be able to be put on the waiting list for EMDR therapy for my PTSD (stemming from my transplant).

I finally spoke to my GP about switching my antidepressant after a particularly low spell & he was happy for me to do that. The new medication seems to be working far better.

Physically I’m much the same but still trying to make the most of the better spells. I’ve also got some return trips to Disneyland Paris planned this year so that gives me something to look forward to.

I hope to be back with some more posts soon. As always, thanks for reading.

This & that

Apologies for the delay in updating. I’ve found the process of having full time care (for the first time) very stressful & energy consuming. I know it will get better but we’re currently having some issues. I will blog more about all that sometime but my head just isn’t in the right place at the moment.

I’m now having acceptance & commitment therapy (similar to CBT, but a bit different) weekly & although I’ve only had 2 (out of 12) sessions so far I’m hoping that it will help me better cope with the restrictions my body puts on my life. Fingers crossed.

In trying to make the most of the days when I feel a bit better I’ve had some enjoyable trips out over the last month or two. I’ve been to a local crocodile farm, found all the scarecrows that were displayed round our village for the scarecrow festival, taken Fluffy Thing for a groom & a walk, caught up with friends, been shopping, been to a local escape room twice, participated in a quiz night, seen Ed Byrne live again & had a crochet lesson.

I’ve also had my share of medical appts & spent plenty of time in bed, as usual.

Fluffy Thing turned 5 earlier in the month. I can’t believe he’s been part of my life for so long yet I can’t imagine life without him.

I think my next ‘project’ needs to be decluttering & tidying my bedroom as I’ve just got too much stuff & nowhere to put it. Hopefully my mum & a carer will be able to help me with the physical parts of this it I can get in the right frame of mind to part with things.

My favourite music artist, Mika, released his 5th album earlier this month so I’ve been enjoying listening to that & am hoping I’ll be well enough to see him live again in a couple of weeks.

1 year of Frieda

21st September 2018 was the date that Frieda, my powerchair, was delivered. Therefore Saturday marked a year of having her. I wanted to write a blog post to publish that day but my cognitive symptoms meant I just couldn’t. So this is a few days late.

Before I got Frieda I was predominately bedbound. I’d used a manual wheelchair previously but my health had deteriorated to the point where I needed more support than that provided so could only use that for very short periods on better days. The majority of the time I was confined to my bed.

The process of getting a powerchair took a while because we tried to go through wheelchair services. It took a long time before they’d see me & then they initially said they couldn’t give me a powerchair which would meet my needs & then decided that I couldn’t have a powerchair at all or even a voucher to put towards one. My mental health had really been suffering with being so isolated so we looked into sourcing one ourselves. After lots of research & a demonstration I found the right chair for me but with no charities willing to help we had to set about getting together enough money. Luckily my village fundraised for me, my parents were happy to use some of their retirement fund & with my very small amount of savings we could afford it. Then I just had to wait patiently for it to be made in Germany. Frieda was eventually delivered to me on 21st Sept last year & she immediately transformed my life.

It’s hard to put into words how much Frieda has improved my qualify of life. I still have days where I can’t get out of bed, but I can make the most of the better days. And unlike when I used a manual chair, I can control where I go!

Frieda has made the little things possible again – I no longer have to use a commode next to my bed, I can now use her to get to the toilet. I don’t have to eat my meals in bed, I can join my parents at the table. I don’t have to watch TV alone or try to fit everyone in my bedroom, we can watch the living room TV together. I can get things for myself that aren’t reachable from my bed…

And then there’s all the places I can go. I can take Fluffy Thing for a walk, I can visit friends, I can go to the shops, I can go to the cinema… I’ve also visited a local safari park, been to London & been on holiday abroad! None of these things would have been possible without Frieda.

Her features mean that my body is well supported so I don’t have difficulty staying upright. The complete 180° recline function means that if I have an episode of paralysis I can lay flat & it will pass quicker. The headlights mean that I can use her in the dark. The seat rise means I can look at upper shelves in shops or speak to people face to face. Her wheel base means that she virtually turns on the spot & is great for indoor use but she can also cope well with being off road.

Frieda was the most expensive purchase I have ever made (I won’t turn this into a rant about the prices of disability equipment) but she has transformed my life.

Having a much needed rest in my reclined powerchair before the parade at Disneyland Paris.