Disabled

It’s one of those things you don’t really think about, it happens to other people. I am now officially disabled I guess? Covid has taken my health from me, possibly my career. Fortunately my husband and daughter are amazing so they are still here helping me to live my life all be it differently to what I expected.

I was able to secure a blue badge and have been granted a few years of PIP payments. It sucks it has come to this but everything helps! The blue badge has been so useful and has allowed me to go places and be more confident, it helps that one of my favourite coffee shops has a space right outside!

I am on the look out for some mobility aids now. I was able to trial a scooter on a recent trip, it was really tiring being upright and alert all day but I was able to join in and it was fun whizzing around doing do-nuts. I just need to find one that can fold nicely in to the car. I have also thought of getting a wheelchair which may be more practical for what I need it for. I’m just waiting to have the energy to check out a local mobility place I can trial things. I’m thinking I may now need a shower chair too as standing/washing my hair is a race between getting the job done and feeling like I’m going to faint. All these things I’ve never had to consider before!

I’m still experiencing the bone tiredness. I’ve had to stop working which I don’t know how things will go. I managed to revalidate recently so at least my options are open for the next 3 years for nursing as a whole but as for my current role I have to wait and see what happens after my discussion with occupational health. It’s generally on a whole a really shit experience to go through but I guess at the end of the day I’m still alive and have my family….

My hope is over time I start to be on the up again and can finally sort the house out. After a couple of years of long covid things are a mess, I have plans… just need the energy and ability to execute them haha!

Long Covid 2021-2023 and on the up (hopefully)

It feels so weird to look at the time frame in this title. 2021and 2022 passed in a blur of woe and symptoms. I’ve started writing the date ending in 2022 as I can’t seem to get my head around the fact I pretty much lost a year and it’s now almost half way through 2023!!!

So what’s been happening with me? I’ve acquired a few diagnosis and undergone some tests. Unfortunately/fortunately I had access of private health care through Mr B’s work. Without It I don’t think I’d have gotten anywhere fast. I’d still be doing breathing exercises and pacing as my two options. I’ll go through my problems and work to show you what has worked for me.

Respiratory- I have been diagnosed with asthma after seeing a consultant respiratory Dr privately. I’d said to my LC clinic and GP I thought it was asthma but I got told no, it was dysfunctional breathing. I did a peek flow diary and trial with an inhaler via the consultant and they diagnosed me with asthma. I now take a daily steroid inhaler. I still get breathless and stuff but having that satisfying feeling of being able to take a deep breath again feels so good. I’ve had tests for sleep apnoea but due to the separateness of NHS and private I’m currently awaiting an appointment on the NHS to discuss a sleep study overnight oximetry test. It’s highly likely I’ve developed sleep apnoea too, which is annoying but hopefully the treatment will improve things.

Cardiac- I had an awful experience with a Dr I paid to see who totally disregarded my symptoms. I did have an echo which put my mind at rest that things were structurally ok but all the other symptoms were ignored. I was told I’d become de conditioned due to the pandemic. This annoyed me as I had been working as a nurse doing all the hours I could to help so I wasn’t sat indoors all day everyday… The respiratory Dr recommended a cardiologist i’d seen people mention before. What a difference they’ve made. We had a long talk about symptoms, medical history etc. I got given an ecg to wear at home, it was meant to be for 7 days but the instructions were wrong so they got a days worth of data ooops! I did a blood pressure 24hr test. Overall I was diagnosed with Dis autonomia/Pots. I had mentioned this to the first Dr who said I’d have had symptoms for years if it was that. Well in discussion it turns out I’d been having some mild symptoms for years anyway which I’d just put down to that’s just how I am/symptoms of other problems. I’ve been started on a cardiac medication called Ivabradine which lowers heart rate. This has helped me a lot and made a real difference in how I feel. It’s nice not feeling like my hearts about to explode every-time I walk to the kitchen. As this Dr specialises is dis autonomia/pots I’ve also been taking low dose naltrexone which is an experimental drug. It has helped overall I think.. noticed especially by the days I do t take I! I still suffer with fatigue but I think the LDN has helped reduce symptoms overall. I’ve been started in another drug ketotifen which is a MaST cell stabiliser. I’m not getting on to well with it at the moment as it makes me drowsey, I hope with time it will improve.

Fatigue- as mentioned I’ve started taking LDN. I am still trying to pace. I’ve gotten better at allowing myself to sleep instead of fighting it. Sometimes it’s just best to give in and have a mini nap rather than persevere and feel rubbish. I still can’t walk very far which is a mix of everything but I’m doing more and more as I can and things are going well. I’ve applied for a blue badge to help with getting out and about.

Pain- when I over do things this comes back with a vengeance! All I can do is rest. I think the LDN has helped stop it being a daily occurrence.

Hair- a lot of my hair fell out. It is now growing back in so I have crazy frizzy baby hairs. This just seemed to take time and I bought watermans shampoo and conditioner to support hair growth. I don’t know if it was a coincidence but my hair got a lot better once I bought the hair stuff.

rheumatology- I went to see a rheumatologist due to the joint pain, mouth scores, weird spots etc. I’ve had rheumatology stuff ruled out which is a relief! There is inflammation somewhere so due to my symptoms and history I’ve been referred back to gastro who want to run some tests as it’s been about 5 years since my last batch. I’m not looking forward to this next Monday.

Work- work has been an interesting battle through the time I was off. At one point I was at risk of losing my job. Luckily conversations were had and reasonable adjustments were made. I’ve been working from home for nearly the last year. In the last few months I’ve started going in to the office for a few hours on a Friday, in the coming weeks I am aiming to increase the time in the office. It has all been very complicated to get to this point but I am pleased I’ve managed to keep on in my career. I’m thankful that the team I work with have been understanding and supporting me to work differently. My Etsy shop Titchabelle is open again and doing ok. It is a nice distraction.

So overall I am in a better place than I was. A big part of improving has been accepting that I am now left with a certain level of disability and then concentrating on what I can do instead of mourning for what I’ve lost. At least it gives me more time to save up for an epic trip to Disney world once I’m able to manage it!

Trying to stay positive

So I survived my recent quarantine, coming out just in time for Izzy’s Birthday and Easter.  We made the best of the weekend as we could with everything on lockdown.    Chris made her a my little pony birthday cake late the night before.  It was impressive!

In keeping with my usual blog theme I have failed miserably at dieting the past 3-4 weeks.  A world wide pandemic and lockdown does seem like a good excuse but I am a bit annoyed at myself for putting a stop to my speedy reductions.  I think it’s more of a comfort eating thing which has always been an issue for me.  I work as a nurse so am still going in to work whilst everyone else I know is at home.  Every time I open twitter or a news site it’s full of posts about the latest health care worker who has died or the latest PPE scandal because the government have royally fucked up or people just having a bit of a rant about being stuck indoors which is equally difficult as yeah I like my job but I’d give anything to be able to be at home safe with my family waiting for this to all blow over….. yeah I know I chose the job I have and have a certain skill set but no one chose this. I’m not wanting to get “political” so I will leave that there.  I just need to stop eating my feelings!

Things have reached a point though where it’s  tough.  We’re getting a bit stir crazy, I feel guilty being able to leave the house and interact with other people for work.  I guess the tables have turned a bit in our family dynamic as I’ve always been the parent at home more due to part time hours.  I just hope Izzy will be ok, she starts school in September. The world will be a very different place.

After my bring down I’m going to concentrate on a few positives-

– Random act of kindness- someone on my Facebook invited me to a random act of kindness group. You post your amazon wish list and other members order you something off of it. I was a bit sceptical at first but I’ve been sent some nice gifts which have picked me up and been a welcome treat when I’ve got home from work.  I’ve also sent a few gifts myself so I am paying it forward.

-Thursday clap- This has been nice, my street have gotten louder each week, Izzy joins in with a recorder someone left at our house. It’s nice to see everyone try and outdo themselves each week.  I’m seeing some negative Facebook posts about it.  Just let people clap.

– School-  Iz got the school we applied for and starts in September.  A plus from the negative is Chris is getting to spend a lot of time with Iz before she starts school which he may not have gotten to do if we weren’t in a pandemic.

– Randomness-  I’m getting some right random stories from people during lock down.  I’m finding my parents hilarious with their neurosis  about milk and bread and the “you’ll never guess what your mum/dad did today” type stories.  Random dad joke of the day from family that pop up out of the blue.  We did a “pub quiz” the other night and we won! I’m not sure what we won- I think an entry to the next quiz and bragging rights.

-Kindness- It’s amazing to see how many companies and people are sending stuff to staff to try and help/support during this time. I got some uniform bags today so I can bring my used uniform home and chuck it in the wash.  Someone sat and made them for us all.  It’s so nice to be receiving stuff like that because people don’t have to do anything but they are.  I just need to find one of those face mask holders! I’m not sure what’s wrong with the shape of my head but the masks with the ear hooks are baggy on me. I’d like to think it’s due to weight loss but I’ve just got weird ears and don’t suit making bun type pig tails to hook them on to.

Theres a lot more to be positive about that I need to keep concentrating on.  This isn’t forever and I should really use this time to learn or do something new… or you know, stick to the diet whilst most pubs, restaurants and social things are shut so there’s minimal temptation. I could be at least 4 stone lighter by my birthday in August. For the first time ever I could be something resembling “summer ready”.  Alas… haribo and fancy coffee exists.

 

Man down

Or woman down as the case may be. I developed symptoms of COVID 19. I’d have probably ignored them if it weren’t for being a contact of several positive cases and isolating people.  I am now hiding out in my bedroom whilst Chris looks after Iz.  I’m really hoping they don’t develop symptoms.

I know it’s not the flu but that is the closest thing I can probably compare it to? It feels like when I caught swine flu back in 09.  I’ll break down my symptoms below just to scare the hypochondriacs among us.

Fever- I’ve not had a fever really (yet). I’ve gone over 37 degrees a couple of times  I don’t really do fevers, even when I’ve been really sick in the past after having Izzy and when I had a raging strep throat infection I think I broke 38 for the infection, post op sepsis with Izzy  I managed 37.5.  That said I’m getting the fever type symptoms I usually get which I know means I’m getting sick.  I’ve been so ratty and moaning at everyone.

Hot  and cold- this links in to the fever side I guess but an odd symptom.  I keep getting hot to the point of agitated, kicking all the covers off but In doing so I get really cold and start to shiver.  At the moment I’m ok though I guess it’s almost 20 degrees and I’m tucked up in bed.

Fatigue- So tired. So so tired  going to the loo and back feels like a mission.  I’m isolating upstairs so fortunately no stairs, I think I’d have to rest half way up. My attention span is rubbish.  This blog post is a push but I’m trying to keep myself entertained. My mum just asked me if I feel up to using my exercise equipment “shame it’s not upstairs” I’d laugh but it’d tire me out.

Body aches- My legs and feet keep really aching.  They’ve stopped so far today but it’s not fun!  Generally a bit achey.  Feels like I’ve walked miles but clearly haven’t. I keep getting headaches that come and go.

Cough- Fortunately  so far I’m not coughing as bad as some people have said but I have a cough and sometimes it’s productive, sometimes just dry and hurty.  My chest hurts and I’m trying to sit up/ lay in chest supportive positions as best I can to make sure I don’t add to the problem.

Other- I’ve got a bit of a runny nose/post nasal drip which is annoying, I’m in a dark room- not too fond of the light at the moment. I was a bit confused last night when I woke up after being asleep and it was dark etc, I can remember feeling confused and I think I spoke to Chris as he was grabbing something from our room.  Luckily I’m ok at the moment but that was a horrible feeling.

Appetite- I’ve lost it a bit but have kept eating my bars as I know they’ve got the required nutrients in/I think out of boredom. Old habits die hard!  I’ve not lost my sense of taste yet but I do think things have reduced a bit as sweet and bitter seem more intense.  I’ve got nausea which comes and goes which is horrible.  Fortunately so far no other digestive issues, hopefully things stay that way.

Test- My colleague is going to see if work can sanction me a test, it might not be possible as I can’t drive and walking to the toilet is a mission so walking to work is off the table.  Unless Chris gets symptoms and is well enough to drive I don’t think I will be able to access it.  It seems unreasonable to get someone to come to my front door.

I’m keeping busy by watching Disney plus and other tv.  I have my laptop as I do have some uni work to do but I just can’t concentrate enough at the moment so we shall see.  It feels really strange isolating in my room.  As I said before I really hope Iz and Chris are ok, it is really hard not being able to give them hugs.

Hope you are all keeping well! I think it’s nap time again for me.

 

 

Who diets during a pandemic ?

Me that’s who 😦

I’ve been trying to stick to my diet with all that’s going on but it is very tricky. The stress and worry kinda makes me want to eat all of the food!!! I have been good (ish) and not eaten all of the food, well until today at least.  I’ve given in to the urge and ordered some Indian food for dinner. I just really fancy it and don’t feel too great. I think it’s hay fever from the tree blossom but I’m paranoid due to the virus. If I didn’t have to go to work at the hospital we would be in full quarantine mode.

It really is a strange feeling being allowed out to work when everyone else has to stay home.  Chris and Iz are at home 24/7 so I do worry a little bit for them being cooped up but they’re dropping me off and picking me up so at least they get a trip out when I’m working.  I’ve managed to get an amazon prime now delivery so we have some salad and meat in the house for a few days. I still want to try and avoid shops as much as I can. Partly to keep myself safe, partly to limit the spread to others as I’d not forgive myself if I were an asymptomatic super spreader.

I have a good stock of my diet food. I am being easier on myself at the moment- it’s a marathon and not a sprint. I baked bread With Iz the other day and I had some.  The carb bloat really affected my weight loss this week but it’s ok… I know eating 800 calories most days will result in weight loss. I’m noticing it in my clothes a lot more now, my dress I’m wearing today feels like it would fall off me if I relaxed my shoulders a bit.

I plan to have a break Easter weekend as it’s Izzys 4th birthday and Easter.  We’re going to hopefully bake her a cake and I got some yummy chocolate bits in to make up for the fact we will be in lockdown still.

Stay safe everyone!!!

So close!

Bloody typical! I was 1lb off of my 3 stone weight loss! I’m still happy though as I lost 3lb taking me up to 41lb lost Since the 5/6th of January, I forget which date I actually started now.

I am happy to think though that by Friday I will be there and then some, sailing towards my next first main goal: the big 5 stone gone!!!  Ultimately I’m not sure where I will stop…. I’d be happy to be a size 16 again, even in the overweight category of bmi.  Shopping would be easier and I’d not look and feel too big.  Let’s face it I’d never get a “bikini body” (without a bit of surgery at least).

I did have a cheat meal tonight though which I will not make a habit of!  We got a bit low talking about the virus and work stuff and decided Chinese food was an acceptable choice. I’m thinking “just my luck to be on a diet during a pandemic.” But I’ve  got to still plan for the long term.  It will be tricky, especially as I’ve got things for baking to keep Izzy entertained when we’re stuck for things to do but I guess if things get that bad having a sniff of some cake will be the least of my worries.  It’s Izzy’s birthday in about a month, I think she is expecting something spectacular birthday cake wise after the gruffalo creation last year. At least if Chris is working from home he will have time to plan and design it… she keeps telling me about the cakes I made for daddy and uncle Richard for their birthdays, I didn’t know 3 year olds were so good at dropping hints..

I suppose I’d better get some sleep as it is going to be a busy week. At least the steps will help my weight loss…. I can’t help thinking about the amount of milk my mum said she’s got in for supplies… at least it wasn’t toilet roll I suppose.

I’m still on it

The diet is still going well.  I’ve been so busy at work with all this Covid-19 stuff I’ve not had the mental space to think and write.  I lost 3lb last week and measured a few inches off which I was happy with.  Things have slowed a bit but I think that may be hormone related.. we shall see!

My weigh in is tomorrow, I hope to try and drink a lot today to flush my system. Iz stills keeps quizzing me about my bum getting smaller.  She’s started bringing me toy food from her kitchen but she tells it’s “special food to make mummy’s bum smaller”. At least she understands in some way.

I had some baked beans last night for the first time in ages.  They’re a “red” on my food list but I can have them the odd rare occasion. Beans never tasted so good.  I think where I’ve weened off excessive sugar, salt etc things are starting to taste really strong and flavourful, which is a nice bonus really as I am finding I appreciate things more.  I’m planning how to increase my water intake today.. drinking is weird, you never think twice about demolishing a pitcher of cocktail but a few pints of water is a bit off putting!

I’ve got 4lb to lose to reach 3 stone!!! I really hope I get it tomorrow.

Update- I’ve been ill

I have so much to do but have been laid up with an awful viral bug. I’m not sure how long it’s been going on for as I felt a bit off when I was away but it came to a head this week.  A few people said I looked like crap at work on Monday and I did feel a bit off.  I got home that night and had an upset stomach and felt awful.  Over night it progressed in to feeling so sick, dizzy and tired.  Yesterday a migraine kicked in but I’m not sure if that was part of it all or just an effect of not eating or drinking much.

The migraine seems to have gone now fortunately, I did have a bit of pain this morning but after a nap I’ve picked up a bit.  The dizzy feeling is lingering though with waves of nausea.  It’s a day I have Iz but fortunately she’s ok with chilling with a poorly me.  I was worried my gallbladder was playing up because of this diet I’m on but it seems to be ok now I’m recovering so who knows.  Maybe it was part of this viral thing.

On the upside it’s made it easier to stick to the diet.  The products were a great help yesterday when I needed to eat but couldn’t face much.  Unfortunately though I’ve been rubbish at keeping my water intake up.  I’m being weighed Saturday morning this week.  Hopefully I will have picked up by tomorrow and can get all the jobs done I’ve not been able to do.

I have a research proposal to write for my final piece of coursework.  I had intended to start yesterday….. hopefully I get the urge to write over the weekend

Un expected

I’m not sure why but I’ve been craving ready salted crisps.  The most boring flavour in the world.  I’ve not given in to the demand… maybe I need to put some more salt on my dinner tonight?  I probably have enough in my system from years of neglect to meet my bodies demands for sodium.

I’ve had a quiet few days, I think the shock of going in to work for one day after leave left me feeling a bit rubbish.  I have been in a sad/contemplative mood though.  I found out that a little while ago someone I once knew had died. I feel like a dick as I think it happened last year, I only noticed because I clicked on a Facebook time hop and his page said in memorial.  I was shocked, I knew him during his training as he was a student when I was a newly qualified nurse and then we met up a few times years later as we both lived in Brighton at the same time.  It’s just sad, he was a nice guy and had so much of life ahead of him.

I think these things just make you aware of your own mortality and how rubbish everyone is (my self included) at keeping in touch with each other.  That and I’m too young to start having conversations like  “do you know such and such, they died :(“.  I know wherever this person is he will be lighting up the place.

So yeah,  sorry if we’ve not spoken for a while. Drop me a comment or a message and I’m sure we will pick up where we left off.

We’re off out to the sculpture park in a bit, hopefully we can get some steps in without getting too muddy.  I’ve just got to avoid the temptation of the nice lunches etc they do there.

The results are in!

This weigh in I was 9lb lighter!!!! Sure I’ve done that in a week at the start but with a week away eating some non diet food I’m pleased with that. I got my 2 stone rosette.  My comparison photos look different.

Overall since Jan 4th (6 ish weeks) I’ve lost 30lb (2 stone 2lb) and 21 inches from my body.

I’m glad I started this diet. It seems to work for me.