Hello again

So chronic fatigue syndrome is not a fun party nor is editing this blog post on my phone with a non responsive blogger on my phone but that is just the tech geek in me.  So I have been away from the blog dealing with life which to be honest has been tough.

I had to give up my job in London which was crushing when workand travelling  started to get tough and a new boss came on board who found it difficult to deal with me and my disability so I quickly removed myself from that situation because quite frankly crying in the toilet isn’t much fun.

I quickly found myself a new job closer to home and my condition seemed to improve for a while. I also got myself a little referral to the CFS clinic in record time and met some lovely people who didn’t seem to mind that I was crying on their shoulder before we had even made it through the door. 6 sessions in now and progress was good.

However I have decided that CFS/ME is a bitch that doesn’t let you get comfortable for too long and with the on set of winter, the looming doom of increased pain, fatigue and brain fog oh and let’s not forget the crying the toilet has returned.

I struggle to deal with people who I am not entirely comfortable with and their moods. I just seem overly sensitive to their moods and think I am the one in the wrong and that their frustrations are aimed at me and my lack of ability to function normally. I hate that I can’t socialise for more than 4 hours with the friends I love without lying on the sofa hours the next day or that I can’t go to a gig with my husband because I can’t stand the noise anymore but then another day it will be fine. You crazy up and down condition

I struggle with the fact that I can’t work normally and that I have to ask to work differently and all the crap that comes with peoples judgement about that. People this is the 21st century we can work remotely and not all of us are lazy assholes who won’t do any work if not supervised

I hate that I struggle to spell simple words that the day before were easy and that I can’t speak some days. Then I feel guilty about not achieving one thing that day because the brain puts a big stop sign in my way.

But I am lucky because this could of been lot worst,I am not one of the 25% confined to bed everyday only seeing those four walls. I have also made some awesome spoonie friends and reconnected with some others. I am lucky that my husband is an awesome dude who is supportive and gets the illness. I haven’t got my shit together but I am hoping that what I have got is enough for now and the rest will come together one day.

Much Love 💕 

Life Lately...

I would like to know how it is the end of August already! Summer is my favourite time of year, the season of holidays, weddings and BBQs. It is generally the time that I feel at my best health wise but not this year.


That could be due to the fact it has been a difficult and full on couple of weeks. We had started our extension which was progressing well, by progressing well I mean they had knocked down half of our house and we now didn't have a kitchen which has meant we haven't been eating as well.

In the middle of all of this, my beloved cat Mr Plato, went missing due to window being left open. This lead to a 4 day cat hunt with posters being ordered (who knew I had the foresight to insure him with advertising and reward! I know how grown up of me!). This obviously lead to some pretty sleepless nights and ended up with me sleeping on the dining room floor with our back door open awaiting his return. After his 4 day jolly he returned looking rather sorry for himself and hungry, meowing at my neighbour and the builder who grabbed him and locked him in. I was convinced at that point he was going to end up concreted under our house so it ended for the best.

So that's what I have been up to, mainly chasing cats around Colchester, I know I know you all want to lead my glamorous life.

Mr S and I also have the first wedding of the year, for which I got my dancing shoes out for as I knew some of my best dancing partners would be there. To be honest I only managed a couple of dances before the chest tighten and my legs decided that they had enough and I paid for it the next day with a tired body. But those dances were amazing and I was glad to be laughing among friends again, some who I have known for 15 years! Really how did we get this old, I don't remember the last 15 years, it seems to have flown by.


Mr S and I are also in the round of 30th birthdays so has involved a few meal/nights out (quite appropriate timing given our lack of kitchen situation). 

Life Lately.. The one where we destroy our back garden

It has been quite a week! I am generally a person who doesn't do things by halves so when we moved in to our house, I decided the flow of the house wasn't quite right for how I and Mr S like to live so basically we decided that when money would allow, we would extend our kitchen in to the side return of our Victorian terrace.  This lead on to an unhealthy obsession with all of channel 4 home programmes and an addiction to the Grand Designs magazine- the things I learnt from that magazine.

Well my blogger friends, that day arrived on Monday, aka the day of the building chaos so I have decided to document all the highs and lows of a building project so you are all prepared if you ever decide to do anything as crazy as this.

 6 hours in, I found I had a huge hole where the extension was going. Quite frankly I was impressed by the builders digging abilities, given that they were having to hand dig this bad boy. The unfortunate news was that the sand soil that had allowed this quick digging, would now mean that we would be needing concrete beams under our extension to support the weight. So the budget keeps rising.

When you are building an extension you learn that you have to make lots of decisions quite quickly otherwise you hold up the build. I was being asked about electrical points on day one and having to plan roughly where the island would go in our new kitchen. This all wasn't helped by the fact, my architect was on honeymoon and we didn't have the foundation plans on paper but being the project manager I am this was quickly resolved. Just hoping the new plans with the utility area appear shortly so I can update the kitchen designer. 

Talking of kitchens I am astounded on how much a kitchen costs and typically I fall in love with the most expensive ones. Might of found a cheaper and still good looking alternative but can't move forward with this until I get an updated set of plans so that is one less thing to worry about for this week.

All of this activity has meant I haven't been able to rest as well as normal so the high activity on Monday left me with very low energy on Tuesday. I have been struggling with facial and back pain over the last week or so, however Monday evening, my jaw line was in so much pain, I resorted to putting a bag of frozen spinach on my face. I obviously still have problems with pacing myself but I guess this is a mind set problem as I don't want to be seen doing nothing.

I have also been having sleeping issues again with overly vivid dreams, last night's one that walls kept going up in my house and I was unable to find the perfect place for the kitchen and even George Clarke (the presenter from Ugly House to Lovely House) wasn't able to help me. It is a sign that the worrying me is concerned about the kitchen and the build but I need to remember we will have a beautiful house afterward. This is if Mr S and I can ever decide on the colour of the kitchen.

K x

Year end report... the 31st Birthday arrives

Yesterday was my 31st birthday, I had opted for a somewhat quieter affair, having forgotten it was my birthday until the Thursday or was I trying to avoid it? I let you decide.

I think it is easy to forgot all the things you have achieved over the last year when you have such a big monster (I am picturing it as the fluffy monster in the workplace pensions ad who turns abit grizzly once in awhile) take over your life so this is my end of year progress report

Health and Wellbeing.... Improvement Needed

I have obviously started to take my health more seriously over the last year. I had recognised that my fatigue and pain was becoming a real issue and was beginning to stop me doing the things I loved such as my personal training sessions with Nush and my sewing (trembling hands are not helpful when trying to thread a needle). In April I decided enough was enough and I had to get help even if I got told there was nothing wrong with me. 

Since I have had every blood test under the sun, MRI scan (hello brain, yes it proved that it existed), physio and be prodded. However progress has been made and I have something to call this energy sucking disease.

I have a tendency for perfection so I put a whole load of pressure on myself when I want to achieve things but that is something I am going to have to learn to let go.

Goals for the year ahead....
- get a referral date and do as I am told
- improve my diet
- begin to find some gentle exercise that doesn't leave me laid out on the floor
- start to do the things I love again such as sewing (but slowly)
- blog about what is going on so it doesn't whirl around in head
- learn people will not judge you if things aren't perfect and that things don't always go to plan

Work.... Good progress

I am fortunate that I am still able to work and get the social aspect of my job because I am a people's person. Work have very accommodating around my illness and I work shorter days, though this has it's own stresses trying to fit in everything I used to do in to shorter hours. This pressure is starting to ease up now I have team around me who are supportive and understand that my workload has to be split in to smaller chunks.

Saying that I did get a promotion this year and given that I only gave up self employment a year ago, I don't think that is bad going. I am keeping the goals pretty light in this area as not sure where this illness will take me.

I have also finally sold my business which quite frankly was killing me, I just couldn't stand the stress of it so having sold this off, it has removed a huge burden I was placing on myself of being perfect and rushing around. I am slowly learning that health must come first (believe me it is a constant heart vs head battle)

Goal for the year ahead....

- Manage to stay employed
- learn what I can from my new boss
- learn to do one things at a time so I don't get in a muddle 
- develop a back up plan in case

 Life, House and Money.. Steady Progress

18 months ago we brought our forever home. she was, what I like to call a fixer upper or more commonly known as the "house of bodge". Next week we put our renovation plans in to action and begin building our extension which I am uber excited about and if I had the energy I would be there with a sledgehammer.

I am not going to lie to you but my research on extension has developed in to an obessision with home improvement shows (love Sarah Beeney's Property Ladder and Double your house for half the money)and grand designs magazine. Mood boards have been made, loved 
all the cutting and sticking, made me feel like a five year old 
again.

This has involved pennies in order to build the extension, who knew bricks can cost so much! But in the long term we will have a home that works for us as a family with fewer walls for me to walk in to.

The money front has also improved over the last year with debts from the old business going down even if it isn't as quickly as I like. However the money problem will always resurface as I have cut back my hours at work in order make progress on getting better so this will be one to work on further in the next year. Ideally I would liked to clear the bulk of my debt by the end of next year so that we are in a much more comfortable position but hey you never know what life is gonna throw at ya!

Goals for the year ahead....

- Continue to pay down debts (debt free by 33 is the aim)
- learn to say no to things I can't afford to do right now, things will wait
- learn to plan before making big decisions (this annoys my husband as I am impulsive)
- Get the extension build and decorated by Christmas so we can host our annual pot luck party
- Find the expensive kitchen I like but within my budget (processco budget vs Lemonade budget at the moment)

Sorry abit of a long one for my fellow spoonies but would be great hear all of your goals for the year however big or small.

K x

Down The Tubes

I seem to spend a disproportionate amount of my life on London's underground system travelling backwards and forwards from work, which might explain my plummeting vitamin D levels recently, that and the complete lack of summer we appear to be having! 

The tube seems to have an etiquite unlike what we are taught by our parents and being a non Londoner by trade, I often fall foul of the status quo. I personally find it amazing how stressed people can get just getting themselves to work. Now me personally thinks sod it, I would rather be late than crush in to someone's armpit gagging for air. People there are big things to worry about like where the next cup of tea is coming from..

The etiquette guide to the London Underground (or basically any communal transport system)

We, as commuters understand your frustration of the hour we call rush hour, will always try to fit one more person on to the tube if possible but sometimes one more person is one person too many. Even if you ( you now who you are!) yell at other passengers to move down it isn't going to make you fit on the tube. Just hang on the platform 1 whole minute, and guess what,another magical empty train appears ( it is magic I tell you, they just appear out of the dark!) WE ARE NOT YOUR ENEMY

Eating a burrito whilst trying to cram yourself on to the above packed tube is also deemed unacceptable. The only time this becomes acceptable is Friday night when you have staggered from the bar and everyone else has a burrito, then it just becomes one old big Mexican party!

Apparently admiring (ie staring for a second too long) shoes, outfit or hairstyle of a fellow passenger whilst trying to work out if that would suit you, is deemed unacceptable and will result in your having to stare at all the vitamin ads near the ceiling...

Same goes for asking said person where said item of footwear or clothing came from, awkward stares....

Plus side of the tube ads is that you always know the Made sale is starting and the handy discount code 

That awkward moment when you have a seat, trying to work out if the lady standing is pregnant and you should offer them a seat and then the relief when someone else does because you were getting quite comfy and had achy legs

The moment everyone charges down the carriage at Baker Street though they have all been told 400 times that all the doors in this carriage will not be opening at the next station. Big LOLs for me.

The time you thought you were next going to get from monument to Bank station and cursing the tube map for making you believe that they were same station. For someone with limited energy this amount a cruel joke, making them trek through Middle Earth 

You will always end up tripping over someone's suitcase especially those small wheelly things, the risk of this mishap is greatly enhanced at Kings Cross, Paddington... Oh sod it basically anywhere in London, they are the bane of the commuter and just remind us that we are not on holiday .. Bad times

The main mystery though is who is inspector Sands? I wait for the day he appears with baited breath

K xxx

Life Lately...

 I ain't gonna lie to you, last week was a tough week. I had a couple of pretty good weeks but I could feel the anxiety building and last Monday I broke down in to a crash which involved me getting upset at work (bad times).

The worry had just got to me, the worry about money, the worry about maintaining our lifestyle, the worry about making a bad decision about where I wanted to take my career or even if it would be possible to maintain my career ( coming slowly to the conclusion it isn't going to be possible).

Money always worries me because there have been times where money was a struggle and I don't want to be back in that situation again now we are in a more sustainable place. It just isn't visable for me to quit my job in London at the moment and I see good learning possibilities in the role at the moment but my head is telling that I just might not be strong enough at the moment to cope with a full time job and commuting. Big heart vs head debate going on at the moment which obviously isn't help with keeping the stress levels down. Stress seems to be one of my main factors that kick off a crash and last week was full of small stresses.

It was a baddddd couple of days which lead me to spending most of Thursday resting with a sleep in the afternoon after visiting my GP who prescribed me some long overdue pain relief and some comforting words of advice. It is difficult when awaiting a referral because there is still that doubt in my mind that I am ill. It is weird how I need someone to validate what is going on with me because I don't trust my own head.

However it was a week of things to look forward to, with wedding dress shopping for my friend on the Saturday which was a grand day out and a flurry of white, lace and pretty things! If you're wondering she said yes to the dress! Being asked to be a bridesmaid has certainly made things a whole lot brighter over the last few weeks and especially as it is in VEGAS! Roll on 2018 is all I can say.

I have also been making friends in the Instagram world with fellow spoonies which has been a great comfort, meeting people who have had a similar experience and gathering all the advice they can throw at me (keep throwing it at me!)

Mr S and I also got ourselves out in to the good old English countryside this weekend to do a spot of strawberry and raspberry picking to stock up our fridges with yummy goodies. We say we are going to do this every year and never get round to going before the strawberries go out of season so off we trotted and picked ourselves some berries( see here is the proof)

There is further excitement in the weeks ahead as we finally! Start our extension to our house which I know will bring further stresses 
but at the moment I am enjoying looking at ALL the pretty kitchens 
on Pinterest (the link in case you want to take a look http://pin.it/N-07J6M). It is a great activity when you are resting up and making huge physical, not digital mood boards some that my brain doesn't forget all the amazing ideas I have seen! I sense that a spreadsheet will need to be set up with all the costs and time scales so I can keep track of all the variables that a build on the house of bodge will throw up. I'll post pictures as we get going so you can all see the transformation

K x

So I have been away for awhile...

Apologies for the long absence, it was not intended but life has played it's tricks again and forced me to reassess my priorities.

For the last year, I have been focusing on work and getting myself back in working in London. It was a difficult transition and to be honest, one that has not been easy. Around September, I was stuck down by 2 chest infections in quick succession and never fully recovered.

This started a long battle to find out why I wasn't recovering like a normal 30 year old. First it was carpal Tunnel Syndrome, due to the tingling in my hands so off to nerve conduction studies and physio I went but the fatigue grew unmanageable and I spent my weekends recovering, blaming the aches and pains down to adjusting to working back in London and hitting 30.

However this became unmanageable in April and off I went back to the doctor who began to have concerns that I might have something more serious such as MS so I was referred to a neurologist with a four month wait! Further to this, blood tests were ordered to rule out everything to thyroid issue and vitamin issues. All the time, I was assured that it was likely it wasn't serious. I found I was vitamin D deficient which is quite common in our climates, with all the sun we get! So I was advised to get myself to Holland and Barrett. However in the long term, this course of treatment hasn't worked out even with a higher exposure to the sun now it is summer and a trip to Marseille where we saw plenty of sun and my new GP, who has been supportive has prescribed me a higher dose that I take once a week.

I was faced with the hard decision to tell work that I couldn't cope with hours I was doing and this was in someways the best decision I 
made as I was sent off to see a private neurologist who ordered MRI of my brain and spinal cord. As you can imagine this was a terrifying time and the Internet does little to settle your fears when you are a natural worrier like myself. 

Fortunately my MRI came back clear which was outstanding news, however this left me unclear about what steps to take next as my neurologist thought I had chronic breathing issues and referred me to a specialist who was £130 an hour so well out of my price bracket so I was back to the drawing board and back to the GP. By this point I had been signed off with modified hours for 4 months so naturally was becoming worried that on going illness would lead me to unemployment.

I had noticed more and more symptoms such as an inability to control my body temperature, poor thought processes and memory, nausea and increasingly painful legs and feet once I had walked short distances. On this visit to the GP, I went prepared with a written list of all my symptoms as I found that I got flustered once a GP started to talk to me but this time, she listened to me and my concerns and finally I feel that I can be winning the battle to actually find out what is wrong with me and hopefully start to battle my way back. It is thought that I have Chronic Fatigue Syndrome/ME so I am now awaiting a referral to a CFS Clinic unless further blood tests point us in a different direction. 

I feel fortunate that I only appear to be moderately affected at the moment and that I learnt very quick when I have pushed myself too far, even an extra couple of hours at work over the course of the week or a day out with my friends can push me over the edge and I need to spend the next day resting in bed or on sofa with my kitties.

You also begin to notice that your emotions also tire easily and you find yourself losin patience quickly with the ones you love who are trying to help me. Even as I type this, I feel my body temperature rising and my brain slowing and struggling to spell words.

This blog is to document an honest account my journey for people who are on their way to diagnosis with this condition and want reassurance that what they are experiencing isn't all in their head as I have thought on a number of occasions and been made to feel by doctors along the way. I struggled to find blogs from CFS sufferers and as each persons experience is different, it is good to know that other people understand your struggle even if each one is personal and unique

K x