Finding The Balance

Gym day today and I woke up motivated to go do my usual gym session but my body was screaming at me to go back to bed and sleep! my cause wasn’t really helped ether by the council had deciding to cut the grass and hedges outside our flat. We had our windows open last night to keep cool during the warm weather so I woke up with horrific hay-fever symptoms! eyes streaming, red and burning it was not a good look!

However me and Robin had been to Kirkcaldy beach with Leo the previous day and the salt air had done my lungs a world of good my mucus was loose and easy to move and I knew the gym would shift it out my system no problem. I had to take advantage of it while I could!

So off to the gym a dragged myself bleary eyed and stuffy nosed. See out of all the thing I deal with daily is finding the right balance between listening to my body and pushing my body. However after 10 minutes at the gym I knew I had made the right decision, I was glad I pushed myself through my grumpy vessel of a body. After my work out I had cleared a vast amount of gunk out my lungs and sinuses and felt altogether better and lighter. It was a different kind of tired to when I initially arrived at the gym and I felt all the better for it.

I don’t think many people outside the chronic illness and mental health community understand that there are many types of tired some require you to rest and sometimes you need to push and fight through because if you don’t it makes thing worse in the long run. This is a lesson I have learn the hard way and yes sometimes I slip up and come up short, however it requires a lot of practice and patience you need to know your body’s limits and and be very in-tune with how you feel mentally and physically something I wrestle every time I need to make the decision to push or not to push.

Anyways I’m off to refill on calories after the gym!

Thanks for reading!

 

 

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Rest Friendsfest Rest

I’ve had a funny week so far… I say funny but for me this has been my norm for a the last 1-2 years. If you recall my last post was a bad day post well after I posted I went for nap had some food lazed on the couch til 8pm and then headed off to bed where I slept for a solid 10 hours. It was for the most part a restful sleep, however I could have done with another 10 hours if I’m honest. However I couldn’t as I was off to Glasgow to meet up with a old friend to go to Friendsfest the tickets had been booked for months and I as a huge friends fan I was extremely excited.

So I forced myself out of bed pumped my body full of my daily medication along with some added on medicines to try get me through the day feeling as human as possible, I took some panadol paracetmol and decongestant spray and an antihistamine.

I had packed my bag with everything could need medication wise again making sure I had paracetmol and my nose spray and all three of my glasses to avoid eye strain for different lighting and reading scenerios.

So off I went full pack back and super excited and as the morning went on I managed to slowly shake off the worst of my sore muscle/bones and sinus pain.

I met up with my friend Ella grabbed some foods to refuel and off we headed to the festival.

There was a little walking but it was fine we took our took regular break and kept our energy levels topped up with cake and central perk coffee mmmmm. We got our photos taken with iconic set and props from Monica and Rachel’s Apartment, Joey and Chandlers Apartment, Ross’s Apartment, The Apartment Hallway, oh and the one and only friends opening credits couch!

It was a great day! However the tour of the set was in a secure location and it was 30 mins 10 minutes per each set which sounds like a lot but with 40 people in alongside you it was very tight, warm and everyone was fighting for there photos.

However after our allotted tour time we went and took our picture with other attractions on site such as the mock central perk couch, the pivot couch set an phoebes taxi. while sitting, watching the Friends reruns on a huge communal screen.

Every so often a staff member who was hosting the screen would come out to do games etc with the guests. During one visit on the stage it was declared the set tours were extremely quiet so anyone who was waiting or their set tour time could go early.

Feeling cheeky me and Ella decided to chance our luck and see if they would let us back in because it was so quiet, not hoping for very much my exact words where “well if we don’t ask we wont get and the worst they can say is no right?”So we both go up and I approach the security ticket guys and say I’ve got something kinda cheeky to ask you? however before I could even ask can we go around again? I am met with “oh you and your friend want to go on your tour early? yeah that fine go right in” I simply nodded and we went in no tickets where asked for or checked so we got to do the tour again with a smaller group of 8 people and it was so much more amazing the second time around! with less people we actually got a tour with a guide that we could hear, chat too and ask questions, we had extra time as there was no groups directly behind pressuring us to move on and we could take the time explore the set fully opening drawers and fridges, reading the covers of books and seeing things we missed first time round along with added bonus that there was near enough no photo bombing when taking pictures.

An amazing day so much fun topped of with our extra tour!

Having a bad day! Sinuses

So you’ve probably realised by now I have a chronic health condition. Well in the world of chronic illness you have good days and bad days… today is a bad day.

With the current heat wave hitting the UK and the pollen count being though the roof it been now stretch of the imagination that I’ve been struggling these last few weeks. However my usual demeanour is to keep going and try to be kind to myself, something I’ve been neglectful of in the past and still struggle with now. Its difficult not to fall into old habits when things get hard.

So with it being so warm its been difficult to get a restful night sleep with the heat all that tossing and turning malarkey, however add the pollen count into the equation and that fact its has somehow triggered my polyps to grow back  at super speed in the space of 2-3 weeks I now have a semi permanent blocked left nostril giving me headaches, facial pain and unwanted eye pressure. Being unable to blow my nose is making my post nasal drip 1000% worse than usual as all the excess gunk is running down the back of my throat (yeah I know gross but i’m afraid that’s how is is). I cant use my nasal nebulizer which usually gives me great eye and facial pressure relief as the vibrations from the machine are trigger migraines, dizziness and nose bleeds. Fun times eh?

So Ive booked in to see my ENT for consultation for another round of sinus surgery. If we both agree surgery is the needed course of action it will be my 10th sinus surgery (personally I think I deserve a cake with 10 candles on it to celebrate .. haha)

However all jokes aside I could really do with a solution sooner rather than later Amy needs her some restful sleep! I’m so tired I couldn’t even muster the energy to stand in  the shower this morning and I forgot to add milk to my bowl of coco rock pops what is the world coming to!

Anyways I’m off to try for a afternoon nap.

Keep you posted!

Annual Review Part 2

1.45pm Cf Clinic time this is pretty standard I do this ever 3 months anyways. However during clinic I needed to run off and do my Bike at Box test at 2pm.

2PM off to my Bike and Box Test

I will start of with Box Test, why is it called a box test I hear you ask? well because this particular test is in a huge clear box that you are enclosed into with a couth piece fir you to breath into (and before you ask yes it gets very very warm in this box as it pretty much vacuum sealed for accurate results). During  the test you are asked to do many different breathing exercises on the mouth piece, testing for various different levels some of these include.

Fev1 (Forced expiratory volume measures shows the amount of air a person can forcefully exhale in one second)

FVC (Forced Volume Capcatity this is total amount of air forcibly exhaled throughout the test)

They also test for airway resistance levels and I am pretty sure there is another one but I forget.

Anyways this test can take up to 40 minutes depending on how long the machinery takes to set up and number of retries you may need to do.

2.15pmish The bike test ah yes my old nemesis, basically a fitness test with a few medical tweeks. During this test I have about 10 heart rate monitor cables attached to me on various part of my body from  my ears to lower chest. I then hop on the bike and I am attached to a heart rate monitor and given a mouth piece that fits into my mouth to keep track  of breaths during exercise. Attached and ready to go, the first 5 minutes I have to sit and do nothing so the examiner can gain a base line to work from beat per minute etc. The the hard work begins! I have to pedal for as long as I can keeping the RPM at 70 as each minute passes the bikes level of resistance is increased and my job is to keep going as long as I can.

Sometimes I am also requested to go for a chest Xray to keep my records updated however this time around it wasn’t requested one less thing too do yey.

3.30pm Back to the Cf Clinic I am getting tired now of course but I know after this I can go home yey! During this time I am given a room to avoid contact with other Cf patients also visiting for clinic or reviews.

During clinic I see many different faces my Cystic fibrosis team is large and faces and names can be hard to keep up with. Usually I see a team leader from each department and we discuss what news/difficulties and or updates I have. This clinic was a big one as it was annual review day so I got to see everyone! There quite a few of them so I will make there indiviual breakdowns short.

Dietitian: Usually takes my weight first then does all her mathematics sum to figure out my weight in stone and pounds and what my BMI currently is. Annual review day we look into my daily calories intake and Creon intake to make sure I am taking the correct dosage to compensate the amount I am eating.

Physiotherapist: Listens to my chest and ask how things have been chest wise she  reviews my physiotherapy exercises and routines, alongside general fitness and gym attendance. Also keeping track of replacing inhaled medication equipment.

Researcher: The researcher is a relativity new part of my Cf team so far it usually been asking for some form of participation in a new study or research.

Psychologist: A vital part of the Cf team there on call whenever she genrally sees to the over alll mental health of all CF patients as being born nd living with a chronic illness can be challenging and extra support is needed..

Nurse: The nurses are fantastic they are usally the ones to takes bloods, sputums samples and pulse The also pass aong any concerns you may have to the doctors and keeps everyone pretty much on time and updated.

Doctor: The doctor always comes in last and pretty much reviews your overall health from the knowledge built around all the other cf teams opinions and examinations, this is the time I can ask questions, share health concerns and be involved in the progression of my health care.

5pm After all that I can go home yeyy! off to the bus stop I go

6pm Finally I am home and can rest

My annual review tests all came back positive this years results are;

Lung function 109% up a massive 8% from last year.

Weight Gained 2.5kg aka 5 pounds

Vital Lung Capacity a massive 116

A great result!

 

Annual Review Part 1

Been meaning to tell you all about my annual review day. It went fabulous! So far all of you not in the know annual review day it a day were I get too spend a day with my local Cystic Fibrosis Team doing various test and check ins. I will run you through what a usual Annual review day looks like.

10pm night before review start fasting for glucose test and abdominal scan for internal organs. Also pack pack lunch and bag for tomorrow alongside paperwork, nutritional diary and sputum samples.

7am day of review get up take medication with sip of water and carry out nebulized medication and physiotherapy.

7.50am hope on bus to local Cystic fibrosis team which so happens to be The Western General in Edinburgh.

8.50am arrive at Western General and head over to Cystic Fibrosis ward to check in.

9am ultrasound scan to check large and small intestines , kidneys, liver, gallbladder etc this took a little longer than usual as my gallbladder decided to play silly beggars and hide for the Sonographer.

9.40am Back over to the CF Ward to tell nurses I was back and get my Glucose Blood tolerance test started. I was keen to get going as I hate having blood taken and I was starving with admittedly wobbly legs from having low blood sugars after fasting.

10am first set of  glucose bloods are taken and I am given my specially calculated glucose drink, its the first proper thing I have had in my system today so even though its extremely sweet and sticky I am just happy to have something in my empty stomach.The first set of bloods are to determine a base line.

10.10am I finish my Sugary Glucose syrup drink and I now have to wait 2 hours from the time of finishing the drink off. This is by far the longest part of the test as you cant leave  or you a walk you literally sit and stay in that one spot til the two hours is done (oh and weirdly enough you are not allowed to sleep/nap the time away as it screws with the test result).

12.10pm The second set of glucose bloods are taken along with some vitamin levels. The second set of bloods are to see how fast and high your glucose levels spike and if your body is producing enough insulin within this time frame to keep up.

After the test is complete I am free! well for an hour or so to get some food I always bring a huge pack lunch kindly made up by the other half Robin filled with all my favourite goodies! as you can imagine I got quite a few stares from the staff nurses having there lunches haha.

Background Beginnings

Welcome to Chronically Creative!

This little blog is really for me and my meanderings thoughts, but if by chance you stumble across my page and you like what find you more than welcome to stay and perhaps follow me?

Brief introduction

So you might be wondering why the blog is called Chronically Creative, not typically two words you see standing side by side. However there is a reasoning behind it, let me explain.

I have Cystic Fibrosis a genetic degenerative illness with no cure, I will go into depth about this in a later post however for now in short I am chronically ill. The creative aspect of the blog name comes from my enduring love of creativity and art.

So their you go its as simple as that!

What Chronically Creative About?

Well truth be known I not 100% sure yet I am thinking along the lines of  arty, health, fitness updates with occasional random posts containing random topics just to keep things interesting.

So there you go I hope you will enjoy my wee blog.