It’s Been a While…

It’s been a while since my last blog post. So much has happened since then, and the cliches of ‘never finding the time’ to write and ‘life running away with itself’ have certainly been true.

Push yourself, because no one else is going to do it for you.

In the space of a few months I’ve planned a wedding (and that wedding has now happened…more on that later); met with seven builders and two kitchen companies for the work we want doing on our house and changed jobs and company – 6 weeks before getting married. Up until a couple of weeks before the wedding, when the heatwave arrived and it became too bearable to even move, I was also working out for at least 30 mins every day.

Our wedding was in the planning for over eighteen months. Before I embarked on it I never anticipated the time and energy it would take up, especially in the final couple of months leading up. We had several spreadsheets on the go, to-do lists coming out of our ears, a multitude of questions to ask and to be answered. Our house became like a wedding warehouse and I’d definitely over -ordered on flipflops, which came apparent when three boxes arrived and they had to go off to my parents’ house to be stored. We had last-minute stressed and panics, sometimes over such trivial things. Six weeks before the wedding I also changed jobs and company so that also didn’t help with my stress levels as I tried to appear as calm as possible on the surface but inside was a completely different story. There was the day, about a fortnight before the wedding that I had an almost complete breakdown over the fact that I’d forgotten to incorporate a sparkler arch (and we’d already bought said sparklers months before) in the schedule and there was no time to do it…but in the end it worked out well and we had a lovely day and both overcame our fears of public speaking. However, it went far too quickly and all those months of planning ended in a blur and we definitely didn’t get to speak to as many people as we’d have liked. Now we are on to the next thing to plan – our honeymoon to South Africa at the end of October.

An obstacle is often a stepping stone

When we first discussed the plans to renovate our house and move the kitchen to an adjacent room I naively agreed to pencil in the start date with the kitchen company we were going to use, to be in the middle of September. I am so glad that Ben put his foot down and said we should delay until next year. At the time I couldn’t see the point – I just wanted it done but the extra time is not only giving us the chance to save more money but the breathing space too. It has also meant that we have had the time to deliberate on our plans. I was well aware that the actual building process would be stressful – I have seen enough housing renovation programmes to understand that – but what I didn’t think would be so stressful was actually finding a builder to do the work – and mean that we’d need to sell a vital organ to do it. From December to June we saw seven builders and a structural engineer – but only four of the builders actually provided us with quotes. Two of them came out with astronomic figures that nearly made us both cry and it seemed to take an age to get anything out of them at all. We also changed kitchen companies and wrestled with numerous plans. And, in January we had our conservatory roof replaced – phase one of the work. We finally found a builder for the kitchen and have a draft plan in place – the build is scheduled for February 2020 and so I expect that after the honeymoon we will then turn our attention back to the building work.

In between all this I have been learning to live with my Lymphoedema. The exercise I have been doing has definitely helped but I do notice that I get tired more than usual. I have been trying to wear my compression stockings every day but when it is hot that’s just not possible. Once a month I’ve been having manual lymphatic drainage massage to help drain off the excess fluid from my legs. I’m due back at the Lymphoedema clinic in a couple of weeks so it will be interesting to see if there has been any improvement to the swelling. Finding nice shoes that will fit me is an ongoing uphill battle but I’ve discovered that quite a few shops now sell shoes for wide feet or I buy shoes in a bigger size, but that means I have to get insoles for my ‘normal’ foot. It took me ages to find my wedding shoes and ended up going with Rainbow as they sold wedding shoes in wide fit – but in the end the shoes I bought were standard fit, something I was over the moon about!

Make your life a masterpiece; imagine no limitations on what you can be, have or do.
Brian Tracy

Since becoming ill last year I have made a conscious and perhaps also unconscious effort to grab life by both hands and make life as busy as possible. My mum also became ill in May – something that really shook me up as she has always been so healthy – so that has also spurred me and made me realise how short life is and to embrace it while you have the chance. As well as our own wedding we’ve had many celebrations this year – one of my best friends got married in May and in the same month Ben’s older sister turned forty so we have had many celebrations around that. We have seen friends and reconnected with family, been to shows and had weekends away.

When I think back to all we have both achieved over the last few months – I can’t quite believe it, and the year is not yet out and we already have so many plans in the pipeline. I just hope that 2020 will be as busy and fun – although no doubt there will be stressful times along the way!

Well That’s Swell Then (Part Three)

At the end of my previous blog post, the doctor told me that I needed to be admitted to A&E and I was found a wheelchair as I could no longer walk due to the severe pain in my right leg owing to the Cellulitis infection.

Ben wheeled me to the A&E building and signed me in. The wait wasn’t going to be too long, apparently. I think we got there about 11:30pm and at around 2:00am we saw the triage nurse who took my obs. My temperature was over 39c, but I was still freezing cold. About 4.30am the nurse came out and said they’d found me a temporary room. But it was just a glorified cupboard with a trolley, a chair and a huge beeping machine. A doctor came into check on me and asked a load of questions and put in a canular in my arm so I could start my IV antibiotics straight away. Different medical staff came in and out of the cupboard-room for the next couple of hours as we tried to get snatches of sleep. Ben was in the chair using my coat as a pillow propped up against the wall.

Just before 7am they said they were moving me as a bed had freed up in the the Acute Medical Unit. I was wheeled up on the trolley and then transferred to a bed where they put me on a drip. Ben saw that I was settled in and then went home to try and get a few hours of much needed sleep. By that point we had been awake for over 24 hours. I tried to shut my eyes but any sleep I was hoping to get wasn’t going to happen as shortly after 7am the lights were switched on and the ward nurses changed shift.

In case you don’t know the Acute Medical Award (AMU) is basically a holding pen before they move you to the ward you need to go to. In my case, I seemed to have been put with all the old men. The only thing that separates you from the other patients is a very curtain, so there is zero privacy to be had. I heard everything, from filling up of bedpans to graphic descriptions of genitalia issues and need for enemas. One old lady would wander up and down the corridor speaking to anyone she could, her adult nappy hanging down, whilst she tried to listen in on medical consultations. The poor healthcare assistants kept having to ask her to return to her bed. She was harmless but I’m afraid when she tried to speak to me I rolled over and pretended to sleep. One patient further up the ward was throwing things around his area chucking the Sharpsbox at the nurses. Luckily he didn’t stay very long and was moved to the mental health ward.

As I was hooked up to the drip I would have to ring the bell for a health care assistant to detach me so I could use the toilet. As I still couldn’t walk I had to have help getting to the loo but I absolutely refused to use a bedpan which is what they kept offering me – I would rather crawl to the loo than have to use a bedpan.

Ben came back to the hospital around 12:30pm with his mum and my overnight bag. When I’d arrived at A&E the night before I’d bought nothing with me, not even my phone charger. It was such a relief to see them, after what felt like a lifetime of waiting. Shortly after they arrived a junior doctor came over. We asked how long she thought I would have to stay in the hospital. When she said ‘two weeks’ I went hysterical and cried so much that I vomited. The thought of staying in hospital that long was unbearable.

Various medical staff came to take blood tests throughout the day to monitor the infection, they were taken from the artery so were quite painful. Some had to be repeated as they hadn’t drawn the blood properly.

Ben went home around 6pm. Just after 8pm I was told they were moving me to Estuary ward. I was given my own room, which although decorated in a drab salmon pink colour with a view of the tower block did mean that at last I has privacy! That night I tried to sleep but I was still hooked up to the drip and it would beep constantly, especially if there was a kink in the line so I barely got any. Ben and his mum returned the next morning. I hadn’t washed since Tuesday morning, which felt like a lifetime ago so Ben took me to the wet room to help me shower.

A couple of hours later my mum arrived, having gotten the train down from Buckinghamshire that morning. I was so happy to see her. All you want when you’re ill is your mum, after all. Immediately she was sorting out the doctors and nurses, asking them questions and chasing them up on things. The Consultant and his team came to see and explained that they would be discharging me on the Cellulitis pathway that afternoon, which means that a nurse would visit me once a day to administer my IV antibiotics and I would need to report to the Ambulatory Care Unit (ACU) on day 3 and day 7. Amazing, I could get out of there!

Find out what happened next, in part four of my blog, coming later this week.

Well That’s Swell Then (part one)

I’ve thought long and hard whether to write this post, to pluck up the courage to talk about something so deep and personal. I went to an event at the weekend where we were encouraged to share our stories, and it made me realise that everyone has their own personal demons they are dealing with. No one has that seemingly perfect life that we are all striving to achieve, despite what their immaculate Instagram profiles are trying to portray.

So…here goes. In 2017 I was formally diagnosed with Lymphoedema. Lymphoedema, according to the NHS website, is a long-term (chronic) condition that causes swelling in the body’s tissues. It can affect any part of the body, but usually develops in the arms or legs. It develops when the lymphatic system doesn’t work properly. In my case, my right leg and right foot is much more swollen than my left, although I actually have the condition in both legs.

Since I hit puberty my right foot has always been slightly puffier than my left. My Mum took me to see a doctor when I was about fourteen to see if it was anything serious. She was a locum doctor who didn’t know me or my family history at all and I still remember the look of derision on her face when she spat out, “it’s because you’re over weight. Once the puppy fat goes it will go down.” So, that was that. Over the years I suppose I just got used to it. Strappy shoes would always dig in a little bit more on that foot and leave an indention but we had other things going on in our lives during that period so we didn’t take it any further.

Then in March 2017 I fell off a chair and everything changed. Being vertically challenged I either have to ask Ben, my fiance, to get things out of high cupboards for me or stand on a chair/ladder/stool. In this case I had stood on a chair and was putting a glass dish away when suddenly the chair gave way and I fell to the floor and twisted my ankle. Strangely enough the dish survived unscathed! The ankle felt fine so I went in to work the next day and all of the following week until I started to feel a twinge. Something wasn’t quite right so I booked into see the nurse, who confirmed yes I had sprained my ankle and I should do all the usual things – rest, elevate, ice etc, but it was nothing to be concerned about.

By Thursday there was no improvement. In fact it had gotten a lot worse. Red patches started to appear on my leg, it felt hot to touch and the foot was even more swollen than before. Luckily, Ben’s mum popped in to see how I was. I rolled up my jogging bottoms to show her and she knew straight away that it wasn’t just a normal ankle sprain, but was Cellulitis. She wouldn’t leave until I had booked an appointment with the doctor. I thought she was overreacting, it would just go away of my own accord. But when I described my symptoms to the Receptionist she booked me in for an appointment that day – completely unheard of at our GP practice, you’re lucky if you get can get an appointment same week, let alone same day!

The doctor confirmed, yes, it was indeed Cellulitis – a bacterial skin infection that occurs when certain types of bacteria enter through a cut or crack in the skin. It is extremely difficult to trace back to the original cause. Symptoms are listed as:

pain and tenderness in the affected area
redness or inflammation of your skin
a skin sore or rash that appears and grows quickly
a tight, glossy, swollen appearance of the skin
a feeling of warmth in the affected area
a central area that has an abscess with pus formation
a fever

Some common symptoms of a more serious cellulitis infection are:

shaking
chills
a feeling of illness
fatigue
dizziness
lightheadedness
muscle aches
warm skin
sweating

I was signed off work for a further three weeks. I went crazy with boredom but got myself into a routine and cycle of sleeping, watching crappy TV, reading, doing jigsaw puzzles. Hanging out the washing became a treat because it broke up the boredom. I’d time my nap to wake up just before Pointless came on the TV. The end of an episode would signify that Ben was coming home soon and that was all I looked forward to. In the first couple of weeks it was painful to swing my leg around, so trying to get up in the night to go to the toilet was a challenge.

I returned to work in early April, my foot was still very swollen and I was having to elevate it as much as possible but the infection had subsided. Certain boots and shoes didn’t fit me anymore as I could barely get my foot into them but I still kept them as a challenge. A few months went by but still the swelling had not gone down. Looking at symptoms online I was pretty sure that I had Lymphoedema. I went back to the doctors and they decided to run some tests. I had countless blood tests (some had to be repeated because they couldn’t get the right reading) and was sent for an ultrasound on my groin to rule out DVT, Diabetes and other diseases. Finally in October after seeing a third doctor, he agreed that yes, I probably did have Lymphoedema. I’d read about a Lymphoedema clinic I could be referred to and asked if he could refer me there. He said he wanted to send me to a vascular surgeon to confirm the diagnoses first. The waitlist would be long and it could take several months before I would be seen. Luckily, I was fortunate enough that my parents paid for me to see him privately, so lo and behold I could get an appointment (on a Saturday too!) within three weeks.

So in November Ben and I went to see him. I thought he would provide me with all the answers to my questions. Why do I have this disease? How do I fix it? Can I be referred to the clinic? But instead I was left deflated, probably with more questions than answers. He didn’t think I would need to see the Lymphoedema clinic. I was just told to buy compression stockings online and if I needed to see him again I could (though obviously that would cost money).

I duly ordered the compressing stockings off Amazon and diligently wore them. Until the hot weather came and they became unbearable to wear not only from a comfort point of view but from a vanity point of view. Who wants to wear a pair of shorts and flip flops with thick black stockings? I think between my initial bought of Cellulitis in the Spring and October 2018 I had a further two or three bouts of the infection (though not as serious as I’d managed to spot the infection signs early) and was regularly taking antibiotics. The thing about Cellulitis is once you’ve had it you are much more susceptible to get it again. One Doctor said it might be my razor spreading the infection so I bought disposable razors. I was trying to do anything to avoid getting it again, but it wasn’t enough. All was fine between June and October 2018, but in mid October my world came crashing down…

To find out more read part two of my blog, coming later this week.