Saturday, August 13, 2016

Defying Expectations

I'm back on skates doing full contact. I've managed two mixed scrims so far in the three weeks I've been back and managed to make every single training session my league has had. It comes at a massive cost to me mentally and physically. My endurance and strength are so low and my mental health is very fragile. Once again I'm fighting those two words "used to". 

My friend shared an article with me about the damage of those words and I'm trying to concentrate on the me now and not the me 18 months ago. Reading it helped, but putting it into practise takes a lot of energy that I don't have to spare. It takes so much sheer determination just to step into the track twice a week. To take part in weekly scrimmages is the hardest. I hate to say it but I "used to" play as a jammer (the one who wears the star and scores the points for her team with the help of a great set of blockers). I "used to" be half decent at it. I "used to" enjoy it. Now I get the fear every time I push myself to try it. 

The hardest bit is wanting to be a jammer. People ask would I like to try it and my brain says yes, I'd love to, gimme that star! My body says no. Jamming will take extra energy, strength and endurance I just don't have right now. Sometimes I do it anyway, I take the star and line up ready to give it my best. 

Mentally I'm so hard on myself. Knowing what my body "used to" be able to do. The worst bit is when other people don't appreciate that. I don't want a patronising well done, you did well... Considering... At the same time though I don't want people openly laughing at my attempts to give it a go. I tried a few times today. I got hit out and knocked down. Every time I got back up and carried on. That does not deserve anyone's laughter and taunting. 

I "used to" be a jammer and a skater. Now I'm a skater and a person working hard at coming back and starting YET again, working against chronic physical illness. At least give me the respect for even trying, for attempting to defy expectations placed on me by others and myself. 

Monday, July 18, 2016

SKatie One Bean!

I'm super slow and way behind on updating my blog as usual oops. Surgery to remove my kidney was done successfully nearly 6 weeks ago now. I had my surgery down in London and was in hospital for I think 3 nights total. 


They managed to do it by keyhole (laparoscopic) surgery in my side and didn't need to switch to open surgery this time. They made 2 larger incisions and a smaller one. The pain has been pretty bad post surgery until about 7-10 days ago when I was finally able to stop taking Oxycodone. 


I managed to persuade the surgeon to take a photo of my kidney before sending it off for analysis. It's supposed to be about double the size it was if it was healthy (usually 8-10cm and mine was 5cm). The right kidney has grown a bit as its been doing the function of two for who knows how long. It's amazing that the body can do this, just cause one kidney to get bigger and take on double the work! 


I think the worst side effect was just how bloated my stomach was constantly post surgery. The combination of opiate based pain killers caused horrible constipation and all the gas they used to inflate my abdomen for the surgery seemed to take ages to dissipate. Luckily things seem to be pretty much back to normal now which makes it much more comfortable wearing clothes (although elasticated waistband pyjamas are still my best friends!) and helps me relax and not worry about my body shape quite as much. 


The cuts are healing nicely (photo taken 16/7/16) and the scabs are just about gone. I'm still very low energy and my fitness and conditioning has taken such a beating over the last 15 months it's finally completely deserted me :/ I'm noticing I need to drink a lot more water which in putting down to having only the one kidney and having part of my bowel removed. Other than that though everything seems fine and dandy. 


I've just started back skating as of last week and am cleared for contact by my surgeon as of this week. I have so many plans and things I want to do, but I'm having to keep a lot on hold still as I learn about pacing (more about this soon). 

Overall though I'm finally done with my surgery journey this time around. Six major surgeries within 13 months has been super tough and I feel like a completely different person. I've been cleared of cancer and all the endometriosis they can find has been removed. I'm taking a contraceptive pill to hopefully stop/slow it from returning and I'm so much more aware of my body and listening to what it needs. It's not over yet, but a major part is finally... 

Monday, May 16, 2016

Struggling

I have a date for my final planned operation next month to remove my left kidney. Mostly this is brilliant news, I should hopefully be able to stop worrying about when it will be and properly start a new life. I've been putting off so much as I have had this surgery hanging over my head. I haven't really been told what to expect afterwards so I assume it'll pretty much be the same as I am now kidney wise. I think regular blood pressure checks but I'll ask a lot more questions at the hospital next week when I'm down for my pre op. 

This was me the night before my main surgery July 2015. I miss this smooth skin, but at least my insides are more healthy and functional now.


This is how my belly currently looks. The stoma reversal wound has finally healed over (it took nearly 5 months, silver treatments and horrible painful iodine treatments to heal) and I am allowed to have baths! I've just started risking putting bubble bath and bath bombs in as the skin hasn't broken open again in plain bath water. It's the most wonderful luxury 💜 


Honestly I'm very nervous about what the future holds for me. My immune system is terrible, I'm still exhausted all of the time and suffer from a lot of pain. I get brain fog and can't hear when I'm behind people. I'm still coming to terms with the fact that I'll never be who I was before this nightmare and it's hard not knowing who I will be. Will I ever be well enough to work properly? Will I ever not have to budget my time so I don't do things two days in a row? Will I have a day I don't rush back from being around people so I can go to bed and sleep? 

My depression is back and has hit me very hard the last month or two in particular. I assumed that after surgery is recover and be stronger than ever. Who knows, maybe I will be, but it's going to be a much longer journey than I had imagined. 

I will continue to strive to better myself both mentally and physically. It's tougher than usual at the moment, but there are little glimmers of hope. 


Sunday, April 3, 2016

A year down the line

It was a year ago yesterday that my life completely changed. It was the day I went to see a client in Cambridge and collapsed ending up in Addenbrooks Hospital not knowing anyone and having no charge on my phone. I just had time to contact a friend who set up Team Crazy Legs (a roller derby group that skates to raise awareness for invisible illnesses and has a confidential support group). She arranged for a couple of people to visit me which meant so much to me. Those until a few days were so scary, I didn't know what was going on besides I had four large ovarian cysts and problems with both kidneys. Cancer was eventually ruled out and I was diagnosed with severe stage for endometriosis. 

(In hospital in Croydon just after my first operation last June)

If you've been following my journey you'll know it hasn't been an easy ride. I've had five surgeries to date including having a loop ileostomy (stoma) which has now been reversed. I can't have children and one of my kidneys no longer works at all.

Realising I've been ill for a long time has caused all of my life to change. I was made redundant and was unable to go back to work after being hospitalised last April. This has meant I've had to move back to Liverpool from London, put my flat on the market, apply for benefits, leave my best friends behind and try and start completely from scratch in a new city. I lost a few close friends along the way when I first got sick which hurt a lot. 

My depression came back with a vengeance and my anxiety peaked. I'm taking medication for both and still working on getting some therapy to help deal with everything that's gone on. I'm being tested to see what's causing the constant exhaustion I feel, it's been getting worse and not better as I recover from surgery. My surgical wound from December is still open and causing me a lot of discomfort and I still have days where I lose complete control of my bowels. 

However, I'm still here. Still doing the best job I can to make a life for myself. I'm back playing roller derby when I can and recently did my first mixed scrimmage in a year. I'm able to jam again (skate fast and score points) and am working at rebuilding my strength and endurance (multiple abdominal surgeries destroyed all my core strength so I'm rebuilding it from scratch). I've made a couple of new, close friends here in Liverpool which is helping me feel like I'm starting to put down some roots. 

(I'm on the far left with three Liverpool Roller Birds at a mixed scrimmage last weekend)

I work three days a week as an intern at a job I love and I'm rediscovering my love for photography. Spare time not sleeping is spent crafting or reading and I'm hoping to start being able to be a bit more sociable and go out for half days out soon. I got really excited recently as I was able to climb a tree! I used to be super active and do indoor climbing which I really miss (I'll get back into it once finances and energy return a bit more), so being off the ground felt wonderful! 

(Me hanging out in a tree with the sons of two friends)

I won't lie, it's still really difficult. Getting out of bed most days is extremely difficult, but I am doing my best to refuse to give up and to keep pushing through. I miss my best friends in Croydon, but have discovered Skype and hung out with them for a couple of hours recently which felt amazing. As they say in Galaxy Quest, "never give up, never surrender!". 


Saturday, March 12, 2016

Mothers Day sadness

Last weekend was Mothers Day. I am lucky to have a caring mother still wth me who has opened her home to me to come back to live with her and her husband. I know many are not so fortunate and so I am grateful. What does make me sad is my endometriosis induced infertility. Having children wasn't really part of my plans, but being told you can't have children takes away that choice and has affected me more than I've let on.

As part of my major surgery back in July last year, to get rid of the four large ovarian cysts I had the surgeon used lasers. Basically these destroyed the eggs inside the ovaries. You are born with all your eggs and don't make more during your life so once they are gone then they are gone (hence menopause). It's such a strange feeling that never will I get to be a birth mother and have a mini me running around out there. Of course there are other options; fostering, adoption etc. I can cook a baby in my oven, I just don't have the ingredients! 

It's rough psychologically. I've found I actually am quite good with kids and really love getting them to come out of their shell, relax and play silly games. When my friends have children I'm overjoyed for them, but a little bit inside of me gets sad and upset. I'll never be able to experience that and the small toddler within stamps her feet and shouts that it isn't fair. Sometimes I listen to her and indulge her tantrum. It's hard not to.

So yes, Mothers Day was a sore spot for me this year. I cherish my cats who are my family and I'm glad I have them to give all my love to. 


Wednesday, March 2, 2016

The waiting game...

Waiting on a date for surgery feels very frustrating. It makes it hard to plan anything as I've said I just need 24hrs notice and I can be in surgery the next day. My pre op was a few weeks ago now and after a couple of courses of antibiotics I am now cleared as fit to have what is hopefully my last planned surgery for a good long time (dare I hope ever...). A date would at least give me something to work around. 

In the meantime I'm working at regaining my fitness. Mostly it feels like I haven't progressed at all, but I am noticing very small improvements. I really should start writing these down at the end of each session immediately so I can track them and focus on the positives. 

Working three days a week at an internship for my dream company is also exhausting, but overall having a structure and a reason to get it of bed feels amazing! I am getting involved with the organisation outside of my job role and had good feedback for my first review. If I'm not at work, there's a 99% chance I'm curled up fast asleep with at least one of my two cats. 


My stoma reversal wound is still open and I have the option of seeing the plastics team to help it heal if it persists. If that involves any kind of cutting of my abdomen then no chance will I do that! Leave my abdomen alone I say! I'd rather have an ugly scar any day of the week. Plus the thought of another operation of any kind just doesn't appeal. Being able to take the dressing off and finally have a bath though would be amazing. Hmm, we shall see how I feel if there isn't significant progress by the end of March. 

One piece of important recovery is I've started to take photographs again. Nothing too exciting yet, but the urge to grab my camera and use it is beginning to return slowly. So far I've spent some time watching and photographing a heron balanced on a small branch from my bedroom window (I am a big fan of heron's). I've also started a project for my work which involves taking photos and writing. Hopefully the first piece will be out later this week. 


Taken on my walk across the park to work. Half of the park was covered in frost and the other green and bright in the sunshine. 

Although I'm not seeing anywhere near as much physical improvement as I would like, some aspects of my recovery are beginning to take form. I'm starting to feel a bit more like I can make things work in a new city and that I haven't made a huge mistake completely starting from scratch. Who knows where I'll end up going from here and I'm a little bit looking forward to finding out. 

Sunday, February 14, 2016

Managing expectations

Trying to whip my body back in to shape is hard work I tell you. My muscle memory is there to be able to do the basics when it comes to roller derby, but my strength, stamina, speed and agility are all gone. It's like my brain knows what to do but my body won't respond. I know it's all about patience, but I've gotten to a point where mine has run out and then some. I want to be back to where I was pre diagnosis and surgeries already!

One thing I'm trying to do is to focus on one or two specific skills during scrimmage sessions. This week it was jam at least once in every period and try and do flip flop blocking (turning from facing forwards to backwards). I find jamming exhausting at the moment, my body just isn't used to being pushed that much. I figure though the only way to be fit again is just to keep doing it, I can beat my body into submission! Not having any core muscles to speak of is definitely showing so that and endurance are my main goals to focus on off track still. I miss climbing and pole fitness so much, but I'm trying to pace myself a little and am not quite ready yet for either. 

It's difficult managing expectations. Now that I'm back on skates it's hard to not be back straight away at the skill level I was before all of this started. I have to work very hard at ignoring the mean goblins that live in my brain and tell me how rubbish and useless I am now. Luckily I have 3 amazing best friends who support me even though they live back in Croydon and don't skate. They always have my back and remind me it's a marathon and not a sprint despite my grumblings and impatience. 


The last two weeks have been hard work for me. I've had a lot of medical appointments and two different bacterial infections causing me more fatigue than usual. I've also just started an amazing internship in Liverpool and again my body is just adjusting to being back in a work environment. Having a structure to my days is wonderful though, a reason to get out of bed. I'm trying to make time to be kind to myself and give my body the rest it needs whilst still trying to improve my fitness. Finding the balance is proving very tricky. 

Sunday, January 24, 2016

Coming back to the track

So my last surgery was nearly four weeks ago now and I'm healing well so far I think. My bowel seems to have settled a lot (I still have oh dear god I smell so bad days) and I have regained a lot of my control now everything is joined back together phew. The wound from where my stoma was is still open but is infection free finally and starting to heal. I still need to wear a dressing at all times so no bath or swimming yet much to my annoyance. I have three more appointments to get it checked plus a consultation with the surgeon next month to do a post op follow up.

My energy levels are still very low but I'm managing to have periods of activity. I've started doing some roller derby training which I cannot tell you how much I've missed! The experience of training as part of a team feels so good. I'm starting in a new city with a new league so it's tough mentally as well as physically. I've had a few nasty anxiety/panic attacks and have been beating myself up about it and not sleeping. I'm really missing the strength, endurance and general ability my body used to have when skating and in general. My feet remember what to do and so does my brain, but my body isn't able to respond as it used to and I find myself falling over my own feet a lot and getting frustrated with myself. My anxiety means I talk non stop which I hate. It must be so annoying for those around me and I can see/hear myself doing it but I can't switch it off or stop which makes me more frustrated and anxious. Hopefully I'll find my place over the next few months and start to relax. Everyone has been really lovely to me so I just need to stop beating myself up about my short comings. 


I will be making lots of lists and goals (yay!) and at the moment my key focus is trying to rebuild my shattered core strength. I've been very careful about listening to my body and it's limitations so will keep doing that so I don't set my recovery back. I just need to accept that it is what it is right now, but I got for before so there is no reason why I can't do it again. I just worry that as I have another operation left that I'll be back at square one again in a couple of months. I'm trying to stay positive and patient, but it's getting harder not to expect more of myself... 

Friday, January 8, 2016

Post bowel surgery recovery

Recovering from surgery hasn't been easy so far, but things are just starting to settle and today I'm 10 days post op. My bowels started working again about 15 minutes after the NYE fireworks and have been all over the place since! I seem to have settled into a 3 day cycle for now.

Day 1 - explosive horrendous diarrhoea, no hope of achieving anything or being more than 10 steps away from the bathroom for 24hrs

Day 2 - churning and confusion over what exactly is going to happen when I go to the bathroom but I can get things done on this day

Day 3 - horribly constipated with painful trapped wind. If anything does make it out of my extremely bloated and sore belly I'm basically a biohazard and the room must be immediately evacuated for the sake of everyone else!!! 


This was taken a couple of days after surgery and was my first time seeing what it was going to look like. The corrugated plastic was poking out as a drain and was removed soon after and the bloating has slowly started to go down as my insides heal. The circle is from where my stoma bag was and is still evident at 10 days post op.


This is how my skin look today at 10 days post op. I had 3 stitches removed today but as its a little infected and weepy I have to leave the final 2 in until Monday or Tuesday. The new dressing is permeable so the wound can breathe now but stops anything getting into it and make it more infected. Having the stitches out feels so much more comfortable although I'm still not allowed to have w bath. All I want it to run a lovely hot bath, pop some bubbles and a bath bomb in and start letting my poor skin recover. I'm now not allowed to shower either doh. 


I think the surgeons have done a lovely neat job of seeing it up and it'll be quite a neat line with a teardrop shape at the bottom where the drain was. I'm still eating my stoma diet food while everything adjusts and being given the best at home cat doctoring treatment possible! 

On a side note about the cats, I had to rush back from being let out of hospita to Liverpool in time to take my beautiful cat Morgaine to the vets to be put to sleep. I really wanted one last night with her, but when I got back I had to do what was best for her and not be selfish. Rest in peace beautiful lady, I hope you find your brother Merlin to play with xxx