Living with a Chronic illness

Having a chronic illness is hard work, especially at the moment, with the current pandemic. As I’ve mentioned in previous posts I am classed a vulnerable and I’m meant to be staying inside for 12 weeks, but I’ve had to go out for various reasons.

Now I have finally been given a priority delivery slot with Tesco, which means I don’t have to go into any shops to get my food shopping. There’s also a service provided by the council where someone can pick up medication for me and do any other bits I need doing. Which is a relief as I was starting to get more anxious about going food shopping and collecting medications myself.

So now I have things in place for essentials I can relax a bit more, the only thing I’ve still been doing myself is walking the dogs as I need to get out an exercise as I’ve been really feeling the effects of not moving around as much as normal. I didn’t realise that just by getting out each day, doing general stuff like food shopping, going to hospital appointments, going to the cinema etc was so good for my physical health. In the last few weeks since everything has closed and I’m stuck in the local area, my joints have been super painful, especially my lower back and knees and my chronic fatigue has been much worse as well.

I’ve spent many years building up the strength in my legs to combat the chronic pain in them and same with chronic fatigue, I’ve spent years building it up to a point where I rarely needed to rest or sleep in the day time. But now I feel like I’m back at square one, which is really frustrating.

Now I’m have more clarity about dog walking, I’ve been out walking more, so I can build myself back up again, so I can feel a bit more human again and have a sense of well being.

Yesterday I had to have a 24 hour blood pressure monitor, as my blood pressure has been quite high recently. I think its mainly down to anxiety and possibly the change in testosterone. I don’t know why they haven’t prescribed propanaolol yet, it’s a beta blocker but also helps with anxiety. I get the results next week and I’m going to ask about the beta blocker as I think its probably the best course of action.

The blood pressure monitor went off every 20 mins, which was really annoying lol as I had to stand still when it was taking my blood pressure because it didn’t read it if I was moving around. Then in the evening from 10pm it went off every hour. I went to bed at midnight in hopes I would fall asleep before it went off again. I managed to get comfortable and I managed to get to sleep, I was conscious a few times throughout the night of it going off to take my blood pressure but apart from that I slept pretty well lol! The world could be ending and I still be asleep haha!

A couple of weeks ago they did an ECG which was fine and some blood test and only one flagged up as a not normal. Turns out I am borderline under active thyroid, which really makes sense, I’ve put on weight recently which I’ve been struggling to loose. They’ll repeat the bloods again in 3/4 months time to see if it’s still the same or its sorted itself out. Hopefully it will have sorted itself out by then, as I really don’t need anymore illnesses on top of what I’m already dealing with at the moment.

It’s been really difficult dealing with everything at the moment, but I am trying to keep a sense of normalcy. Each day is different, some days are much easier then others and that’s ok, just trying to go with the flow and trying not to push myself.

Well that’s it for now,

Peace out

Zak

Surviving self isolation

Yesterday I said I was going to do a timetable of stuff to do during the day and as I was thinking about it, I realised that having a chronic illness makes a timetable a bit hard and feels too pressured. Also I can’t say how I am going to feel from one day to the next. Like I slept 11 hours last night, I went to sleep around 12:30am and I woke up at 11:30am, I must have needed it and all day I’ve felt a bit tired.

So instead of a timetable, I wrote out a list of things to do and divided into sections.

The sections don’t have set times, just go with whatever feels good. But its also important to remember its perfectly fine to do nothing at all.

Quiet time is always good to do regardless, its good to switch off and be still, its a god time to go within.

I haven’t done much today as my fatigue has been bad and that’s ok, to just rest and do what my body needs.

Peace out

Zak

Self care + Chronic illness

I have a really cool book that’s called Health Minder Personal wellness Journal, its really detailed and its great for keeping track of your physical and mental health.

I’ve not used it in 2 years and I thought since I have a lot of the Covid19 symptoms anyway because of my autoimmune disorder, I thought it would be a good idea to start filling it in again as a way to keep an eye on my symptoms and notice any changes there maybe. Also its a good way for me to check in with myself in the morning a and evening, which may help me connect with myself.

I was gifted this book from a friend, but you can get them on Amazon, eBay and MemoryMinder Journals website.

For me it is all helpful but my temperature is usually lower then the average 37 degrees. My temperature can range between 35 degrees and 36.5 degrees, anything higher then that for me indicates that I have a fever. So if I do get sick this book will be good to show to the doctors so they can see what my temperature is usually, so they can see that 38/39+ is a very high fever for me. Plus them being able to look at my symptoms and how things have changed etc and saves me explaining things over and over again.

I think it will be good to keep an eye on the slightest changes in my weight, temperature and symptoms, so I can make sure I am keeping as well as I can and not picking up any infections, whether that be the Covid19 or my usual sinus and chest infections.

I hope you’re all keeping safe and keeping as well as you can.

Peace out

Zak

Self care during self QUARANTINE

I suffer with mental health issues, mainly depression and anxiety. But also struggle with disassociation and gender dysphoria. As I’ve mentioned in previous posts, I started myself back on trazadone to get through this tough, uncertain times. I’ve been back on it for around 5 days now and I’m already feeling a little better then I was feeling.

I know what its like to be socially isolated and it freaking sucks! It’s super hard! Even though I can be shy and a bit of an introvert, I do love being with other people. But as I am vulnerable to getting the covid19 I am staying away from people, ie not having people over and stuff. So I’ve been thinking of ways that I can stay connected with people, so the social isolation doesn’t hit me so hard and I can stay sane and mentally well.

One thing that has helped so far is that I’ve been reaching out to others who I know are in the same situation as myself and making sure they’re doing good. I find it hard to reach out to others when I need help, but this is a unique situation, we’re all kinda feeling the same anxieties and uncertainties, so I don’t need to express explicitly that I need help or support, as we’re all in the same boat right now. Which is making it much easier for me to reach out, as I feel like I’m helping others instead of asking for help/support which I’m not keen on doing.

I’ve offered people video calls/voice calls and messaging, to ease the social isolation and I’ve had a few video calls and voice calls with a few different people already and its been an absolute blast. Talking with my friends has definitely helped! Video calls makes it feel like I’ve socialised and got that essential interaction with people that we all crave. It makes the days feel less lonely and isolated.

I know I am often viewed as someone who is strong and capable, as I rarely let myself be truly vulnerable in front of people. So I feel like sometimes people don’t check in on me, as I’m seen as someone who can look after themselves quite happily. Whilst yes I am more then capable of looking after myself but I have my struggles. I’m trying my best to keep reaching out and talking to people. So I can feel connected with others and feel like I’m making a difference to others.

At times like this it’s important to remember no matter how alone we may feel, we are not alone! There is a community out there to help get you through this, you just have to be brave and reach out.

I’ve also been trying to keep some sort of routine, although its super flexible, I’ve just been trying to keep doing the things that for me are non negotiable for example I have to make sure I take my meds in the morning and evening, doing my sinus rinse morning and evening, do the housework every other day, walk the dogs twice a day, eat 2 meals a day. I’ve kinda given up on my sleep routine as I’m more awake in the evening hours anyway. I’m still making sure I get enough sleep, whether that’s napping in the day or waking up late.

I try and split my day up into units of time so the day doesn’t feel so overwhelming. I also try and remember that I don’t need to fill every second with an activity, its totally ok to just sit and be.

I roughly know how much time certain things will take me to do, like doing the housework takes about 30-40 mins, having a shower and getting dressed takes between 10 and 20 mins depending on how long I’m sitting in the shower for. So I know that when I decide to wake up and start my day how long it takes for me to get ready for the day and that’s like the first unit of the day and then depending on how I feel and what the weather is like helps me decide on what to do with the dogs, either a long walk or a short run around across the road. That’s another unit of time take up and you get the idea, cutting the day into more manageable chunks without feeling so overwhelmed about having to fill a whole day.

I wrote a list of things I can do on my own whilst were all on lockdown, so I’ll share with you what I wrote down

Things to do during self isolation –

Check in with myself daily

Video call friends

Reach out on social media

Write and blog

Try and read (I have adhd so I struggle to concentrate sometimes)

Listen to podcasts and audiobooks

Colour/draw/create something

Teach Scrappy new tricks

Play video games

Teach myself to play solitaire with playing cards

Nextflix/Amazon/DVD’s

Spring clean the flat

Walk the dogs

Watch YouTube videos

Create a cosy fort/nest

Yoga

Make bread, cakes, biscuits, meals

Nap

Be silly

I hope you’re all coping as well as you can during these uncertain times. We need to come together as one, show each other the kindness, the compassion and the unconditional love that I know we are all capable of.

If there’s anything you want me to write about/comment on please let me know and I shall try my best. Please like, share, comment and follow my blog

Peace out

Zak

Surviving self isolation

I’ve spent the last few days thinking about stuff, I think being forced into self/social isolation has a tendency to do that. Whilst I am used to social isolation, its something that is really bad for my mental health. So I’ve had to really think about how I am going to get through this, without spiralling into the darkness.

The first thing I decided was to start back on trazadone, I decided to stop taking it as I felt like I no longer needed it. Although having stopped it, I realised they were helping more then I thought they were. They helped me focus, stop disassociating as much as I am right now, took the edge off anxiety and depression, all which have come back but I’ve been able to keep on top of them a bit. Now we are in this self isolation and not being able to do everything I enjoy I know my mood, anxiety and disassociation will get worse, so I know I need to get on top of this. Not something I really wanted to do but I need to do.

I need to write down a list of things I need and see if I can try and get hold of them, I don’t need much just a few bits to get by. But as I’m vulnerable to this condition I need to try and be as prepared as possible.

I also need to write a list of things I can do inside, things I can do to keep the fur babies occupied as well. I can still take them for walks but with my chronic pain and fatigue I can’t always be outside with them.

I need to write out a rough routine that I can try and follow, I do better with a routine. Although I know I easily get bored of routine, so it won’t be something I will follow strictly just guidelines really so I don’t feel like I’m just floating around.

My asthma clinic appointment was cancelled as my doctors aren’t doing face to face appointments unless they are an emergencies, which I understand. I can still get my testosterone injection as that is something I need, so that is booked in for 14th April. I did ask if I can get paracetamol on prescription just for now, as I cannot find it anywhere and I don’t want to search the shops. I was told to ring back, but wasn’t able to get through, so I will try again tomorrow.

I plan on writing more, whether that is a blog or just scribbling down in my notebooks. I’ve felt so disconnected from myself I’ve struggled to write anything that I felt connected with.

Once I have some stuff written down about how to get through this self isolation, I will share it on here and hopefully as a community we can come together and help each other get through this.

Peace out

Zak

Chronic illness – Covid19

I’ve been back and forth about writing this as the entire world is talking about it and rightly so as its serious.

There’s lots of information out there, misinformation, real information and so on. There’s also a lot of people panicking. So it’s hard to know what to believe, what to do etc.

Obviously there are countries like Italy that are on complete shut down, to contain the virus.

I am stuck between trying not to panic but also panicking a bit, as I have an autoimmune disorder, I am on immunosuppressants, I have no immune system to fight off simple infections. For me a common cold will go to my chest and sinuses and I will need a 2 week course of antibiotics to try and get rid of it.

My mum is panicking a bit, keeps asking if I have stuff in, which is a bit annoying but also my local shop is out of the basic necessities. Luckily I have what I need for now but I can’t get paracetamol anywhere, so I may need to ask the doctor for a prescription but that’s if they will let me as I will run out eventually.

I can’t not go out main reason being is the dogs, I have to take them out to pee and for a run. But also I cannot stand staying in for long periods of time, it makes me feel claustrophobic and just isn’t great for my mental health. So whilst yes I probably need to stay away from populated things like the cinema (my fave thing to do) public transport etc, I still need to go out in the fresh air.

Until the government tell us not to go out at all, I am going to continue to walk the dogs.

I’m just trying to remain calm, not read everything I see on the coronavirus and carry on kinda as normal.

I was lucky enough to not get swine flu and bird flu when that hit, so am I hoping I wont catch this either.

My poor step dad is currently in hospital in isolation, not because of the coronavirus but he has a condition that effects his lungs and he’s been in and out of hospital for a few months now, which hasn’t been looking great. I don’t know how long he has left but I can’t risk going to see him, I can’t risk infecting him with anything and I can’t risk picking anything up either, which really sucks.

I’m just trying to rationalise this whole thing, try and keep myself safe as I can and just be sensible about the whole thing and not panic.

Stay safe, be sensible, please consider those around you, wash your hands, if your sick stay home! Do as your government advises.

Peace out

Zak