Cambridge.

As you all know, my ultimate goal is to get back to studying at Cambridge University in October 2019 after having to begrudgingly take three years out due to my ill health. Before I return, I have five exams to sit despite not really being able to pick my folders up since I was forced to intermit, and so this has left me with a hugely vast, seemingly impossible, amount of revision to do. Whilst still facing appointments, procedures and awaiting operations, starting and getting into university work has been so overwhelming, but means so much to me as my place at Cambridge is all I have left.

University have told me that I can have three sets of ‘supervision’s’ between now and my exams in May, but these supervision’s won’t be ‘teaching’ as such as I can’t be seen to have an educational advantage over the other students, but I can bring my own questions for them to be answered. I’m also not allowed to have any work marked. The first two days of supervision’s were yesterday and today, and so I’ve just got back from a couple of days back at Churchill College, Cambridge.

Yesterday, I was full of a real mix of emotions going back, back to a place where I should have completed my undergrad, potentially already graduated from, and a place that I loved so much before my health took me away from it. My overwhelming feeling was nervousness, worried to be seen in a wheelchair when I didn’t have to use one during my first year, worried that I’m no longer good enough to be here, and worried that I don’t know enough of the work and would feel stupid.

When I arrived, the first thing that happened was bumping into Shelley, a member of staff that I was close to when I was at Cambridge and has been extremely supportive to me, and seeing her first was the best thing that could have happened. My concerns were instantly eased by Shelley’s kind words, and being told not to worry because ‘I was home’ really meant a lot to me. This gave me so much more confidence going into the two days that stood before me.

Being back in the college genuinely did feel like I was home; it’s the place I’ve had the greatest sense of belonging, and that was still exactly the same, just this time I was in a wheelchair with a carer. We went into the room we would be staying, and I felt just like I did when I was there, setting my revision up at the desk and settling in.

I then met with my tutor who has been so kind throughout my intermission, and it was so lovely to see her again too. I just felt so welcome and even my tutor commented on seeing me sitting, working at my desk it felt like I’d never been away.

I then had to face my first supervisions in years; I had two on Thursday and one this morning. I was so looking forward to getting back into the work, and I found the supervisions really beneficial when I was there, but being out of practice for so long made me nervous despite them just being my questions rather than how they used to be. However, they didn’t go as badly as I expected at all, and I felt like I got a lot out of them as well as starting to get me back into the routine of uni and doing work. It was also lovely to see the supervisors that I knew from when I was there and it really did feel like I hadn’t been away (apart from the amount of work I need to get back into)!

As determined as I am to get back there in October 2019, there’s still a lot to be done in the meantime and a lot to face. I still have medical appointments, procedures and surgeries in the meantime, and a lot of revision to do to get myself back to where I was at the end of my first year. As well as this, the first year course has changed since I’ve been there, and so whilst that won’t be examinable for me, the second year courses now reflect the changes and so I’ve got to go through the new notes myself and ensure I’m up to speed with that before I go back.

I also have concerns about going back in a wheelchair and needing the help of a carer. I loved my independence when I was there, and not having this in the same way is difficult to come to terms with. I’m also going back not knowing anyone still there, and trying to make friends is so much more difficult whilst having to use the chair as it’s so isolating, and who wants to be friends with someone who has the added worry of having to use a chair etc?! There are also places in the college that I won’t be able to access when I have to use my chair such as the bar on days I’m unable to walk short distances… I know my priorities! However, I’m trying to adopt the way of thinking that all of that is out of my control, and one thing I can do is get back there, immerse myself in university life as much as possible whilst concentrating on my degree as, after the past three hellish years with my health, that is what I want to do more than anything in the world.

I’m so glad I went back for the last couple of days as, in addition to reaffirming my burning desire to be back there, it’s also inspired me to get my revision done and chase my dream. ‘There are no limits to what you can accomplish, except the limits you place on your own thinking’.

Crohn’s and Colitis Awareness Week.

This week has been Crohn’s and Colitis awareness week – these are conditions that often aren’t widely talked about or known, and I definitely didn’t have awareness of before I was diagnosed at the age of 17. Crohn’s disease was my first diagnosis before EDS became an issue, and when it was flared, which it was constantly for numerous years before I found a drug that fortunately put me in remission, it was so so debilitating. I had numerous hospital admissions to have IV steroids and various tests, which was still the case throughout sixth form and my first year at Cambridge, really turning my life upside down.

Crohn’s Disease and Ulcerative Colitis are the two most common forms of Inflammatory Bowel Disease, and these conditions affect over 300,000 people in the UK alone.

Symptoms can vary from person to person, but they can include; diarrhoea, stomach pains, fatigue, weight loss and anaemia just to name a few. This is way more than a ‘pooing’ disease. The symptoms make this disease so isolating, with so much stigma around it. When I was first diagnosed I just couldn’t leave the house, and was always panicking about where the nearest toilet would be if I did go out. As well as these symptoms, IBD can also impact joints and can cause eye inflammation.

There are various methods of diagnosing inflammatory bowel diseases, one of the main methods being endoscopies. This involves a doctor using a flexible tube with a camera to examine the digestive system. X-Rays, MRIs, ultrasounds, blood and stool tests can also be used to make a diagnosis.

Treatments vary, but the aim of them is to reduce inflammation in the gut and ultimately achieve remission. Once this is the case, maintenance medications are usually prescribed long term to try to prevent a relapse. Often in a flare, initially a weaning course of steroids are prescribed to reduce inflammation and allow the bowel to heal. Once symptoms calm, maintenance medication is started. In my case, I tried multiple maintenance medications with no luck and my symptoms became very steroid dependent which means now that I have adrenal insufficiency and have to take steroids for life. Fortunately, after years of trying different medications, I was approved funding for Humira and inject myself every fortnight which allowed me to achieve remission.

Crohn’s disease turned my life upside down, but also turned the lives of my family upside down too as they were going through the pain, upset and struggle with me. My beautiful sister, Laura, ran the Great North Run last year for Crohn’s and Colitis UK after being there through everything I’d gone through, and I was so proud of her raising money for such a worthy cause, and one very close to our hearts.

Crohn’s and Colitis awareness week is a chance to support the 300,000 sufferers, and millions more worldwide, as well as making these incurable, often invisible illnesses, visible. This week is the optimal opportunity to increase understanding of these conditions, and raise awareness of the debilitating nature of Inflammatory Bowel Disease.

Decisions.

Decisions are difficult to make, especially when they involve something finite; something that will be that way for the rest of your life.

I’ve been having problems with my ileostomy recently, and I tried just to carry on despite the issues, but the pain and other symptoms have been so severe I ended up having to see my GP about it. Believing it was beyond her remit, she contacted the on-call surgeon urgently at UCLH where the operation was initially done, but was told that because of my complex medical history it really is my surgeon who would have to deal with it. An urgent plea for me to be seen resulted in an appointment with my surgeon a fortnight later, which was last week, and it’s taken me until now to put this post together and try to think about how I feel with regards to what I now face.

The surgeon told me that what’s happening isn’t normal, and we can’t rule out the most sinister possibilities, so the first thing that has to happen is an urgent colonoscopy, which will be within the next 2-4 weeks. Hearing this news shattered me. I’ve had major surgery just 7 months ago to have my stoma bag with the promise of solving a lot of my bowel issues, and already I’ve been having debilitating problems as a result of it. I’ve had countless colonoscopies, firstly for my Crohn’s disease management and then again for my EDS related intestinal dysmotility, and I find them so hard to go through.

It’s not only the camera itself as, despite the sedation, it’s still painful and not the nicest experience, but the bowel prep you have to drink beforehand is dire; for me this is the worst bit. Even with my bag, I’ve still got to drink this prep which ultimately clears out your bowel whilst you fast in preparation for the test. Firstly I’m not actually sure, with the current state of my Gastroparesis, that I’ll actually be able to keep the prep down, but secondly it results in your running back and forth to the loo, and with not having the greatest mobility this isn’t the easiest thing! It tastes vile and the stomach cramps it also results in are unbearable on top of my current pain. Still, I could moan on forever, but unfortunately this camera needs to be done as a matter of urgency to be able to eliminate a few things that could be going on.

Then came the even harder hit. I may require more surgery, and this would be to make my ileostomy permanent. Firstly, I really don’t think I’m mentally or physically strong enough to go through major surgery again right now, and secondly, mentally, I can’t face the idea of my ileostomy being permanent. This sounds crazy, as I could end up having my current ileostomy for life, but having the possibility of it being reversed still there, I just feel so much better. The idea of it being definitely permanent with no way out feels so oppressive… I just can’t explain it. There may never be a cure for EDS related intestinal dysmotility, and so my loop ileostomy could be forever, but if there ever is a cure, I can have it reversed and could ultimately poo normally again. However, if they do make it into an end ileostomy, this possibility would be taken away from me.

It’s all so overwhelming at the moment, and I’m not sure what I’m going to do going forwards, or whether there will ultimately be a real choice in it; for now I’m just waiting for the colonoscopy on 20th December and will see what the results will bring.

Taken for Granted.

This post isn’t a plea for pity, but this last week whilst having a flare of some other Gastroparesis symptoms again, I started to think of all the things I used to take for granted which I’d do anything to be able to do now. Of course there are people who wish they could do things that I am able to do, and I’m so grateful for what I can do, but I’m sure there are things I take for granted still even now.

1 – Eating.

Eating is such a simple pleasure, and for me it’s something that I can’t do at the moment without being sick and having severe stomach pain.

This was the case in April after my ileostomy, thought to be due to Gastroparesis, and led to a period of tube feeding. I eventually got my vomiting under control with high doses of a strong antiemetic, but I had to constantly increase the dose and now I’ve maxed out the dose and it’s becoming ineffective again, meaning I’m back to losing weight, being sick constantly and it’s hugely getting me down.

What I’d give to be able to go out for dinner and not have to worry about it reappearing in a bucket soon after!

2 – Access/Stairs.

Before I was in a wheelchair, it didn’t even cross my mind that I would ever have to worry about not being able to get into places; ignorant I know.

I can’t explain how awful it is either being a huge fuss to get into places, or finding out that now, even in the 21st century, they’re totally inaccessible. I like to just ‘blend in’, something that in a wheelchair is difficult to do anyway, let alone a shop or suchlike having to get out a portable ramp or physically lift my wheelchair to get me inside, causing a huge scene.

There are also some places that aren’t at all accessible; this could be due to things such as them not having a lift, or being a building without a ramp entry. This gives me no choice but just not being able to go to these places, and it’s so utterly unfair.

3 – Showering.

I never imagined that showering and washing my hair would be something that would take so much energy, and something that would become so difficult to do.

I use a shower seat to prevent me fainting which I would otherwise do if I were to stand in the shower, but washing my hair often results in dislocations of my shoulders or other joints, as well as totally wiping me out. It’s such a simple thing, and I should be able to wash my hair and shower as and when I’d like to, but unfortunately this just isn’t the case whilst having these chronic illnesses. I’m so grateful for my carers who wash and dry my hair for me when I don’t have the energy to do it myself. (I’m also grateful for dry shampoo!).

4 – Education.

I have always dreamed of going to university, and getting into Cambridge really was a dream come true. It never crossed my mind that my health would prevent me from studying, something that I’ve always enjoyed doing.

I should have either graduated earlier this year, or being doing a masters now, yet here I am only finished my first year, having to take three years out, battling to get back next October despite my body having other ideas. I would give up absolutely everything to be back in that position and completing my degree, ready to embark on a career in medical research.

5 – Standing/Walking.

Nipping round to the shops, popping to see my Nan, and just moving around with some independence was such a blessing, one that I really shouldn’t have taken for granted. Independence is such a wonderful thing, and being stripped of it at 22 is so difficult to deal with. I would love to be able to just stand up and walk out of the house without the fear of fainting, the chance of dislocations or the need of a wheelchair/carer… but I can’t.

I do what I can indoors on good days, but the restriction of just not being able to stand without fainting sometimes, and walk without either faints or dislocations is so oppressive. I’d love to just be able to stand up and take Jeffrey out for a walk, but I just have to make the most of doing this, and many other things, in my wheelchair with a carer.

These are just a handful of the things I previously took for granted, and I’m sure there are many more. It’s so hard thinking about these, and putting this post together was really difficult, just wanting to be able to go back to doing these things that I never imagined losing the ability to do so. However, I have to take a step back and just be grateful for what I do have and what I can do as I know, from experience, that we don’t know what tomorrow will bring.

GUEST POST: Total Health for a Total You With Self Care.

It seems appropriate as this week is ‘Self Care Week’, that this post is about achieving total health with self care. It’s a guest post written by Jennifer McGregor from ‘Public Health Library’.

When you can’t think of the last time you got a full night’s sleep, didn’t have eight dozen deadlines at work, or even had a healthy, home-cooked meal, you are in need of self-care. What you need is a complete approach to your health, one that involves everything from dealing with stress to smoothing the bunions on your feet.

This kind of total change definitely won’t happen overnight. Yet if we’re making good choices for ourselves during each day involving our state of mind, diets and bodies, we can work on all parts at once and be in total health.  However, in order to get ourselves healthy, we need to first explore the key to total health: self-care.

What is Self-Care?

Let’s say that you had a wealthy great uncle who passed away and left you his 1928 Rolls Royce Phantom 1 in flawless condition. Would you make that your daily transportation? Would you drive it to the grocery store and leave it in the parking lot to have shopping carts bump into it and leave dings in the body? Would you let it sit out in the rain, or drive it through the snow? Chances are you would keep it garaged and only take it out for a drive every once in awhile. In short, you’d take care of it.

So why not consider your total health as valuable as that Rolls Royce and care for it even more?

Self-care is simply about taking daily actions that nurture your total well-being. While that looks different for everyone, it’s important to come up with some daily strategies for self-care that work for you, and those can range anywhere from how you deal with daily stress and the healthy foods you choose to eat, to exercising and getting a good night’s sleep.

Combatting stress

Daily stress is a fact of life, whether it’s at work or with our families. According to survey data from the American Psychological Association, between the autumn of 2016 and January 2017, the stress levels of American adults increased to 5.1 on a 10-point scale. Incorporating some simple relaxation techniques during the day can diminish the stress you feel. They can include learning how to meditate or just getting away from the office and sitting outside for a few minutes. Learning how to detach from the stressors, even if it’s just for a short period of time, can allow you to return to your work refreshed.

Eating Well

It’s hard to focus on eating a balanced, healthy diet with so many fast-food and junk-food options surrounding us, but eating well-balanced, well-prepared meals is a big part of taking care of yourself and your health. Start with focusing on the snacks you eat. Swap out potato chips for nuts and eat fresh fruit instead of donuts. You might even consider peanut butter on graham crackers if you truly need something sweet. For your meals, be sure you include leafy greens and proteins such as fish and chicken breast and drink water instead of sodas. Not only are these foods healthy, they’re also good for battling stress.

Sleeping Soundly

Crashing on the couch after a hard day’s work at midnight isn’t the best way to get a good night’s sleep. For one thing, you need at least eight hours of sleep each night. You can get it by switching off all your electronic devices at night so they’re not distracting and making your bedroom as cool and comfortable as possible. A restful night’s sleep also improves your mood each day, which can also affect how you handle stress.

By using these self-care habits each day, you can be on your way to total health.

Photo Credit: Pixabay.com

My Birthday.

It’s really hard to explain, but contrary to most people, I find my birthday a really difficult time. For me, it marks the passing of another year, and here I am still stuck in the same predicament, not back at university, not managing to lose any weight, dealing with increasingly more symptoms and relentless ill-health. I can’t celebrate my birthday like I used to or like I should be able to, but my family’s and friends’ efforts to make it special don’t go unnoticed and I appreciate it more than I could ever express.

My birthday started by me opening my presents from my parents before they had to go to work, before my carer, Jeffrey and I went to my friend, Thea’s, flat. There, I continued to be absolutely spoilt with a personalised birthday hat, gorgeous presents and a homemade cake.

I had a few visitors in the afternoon bringing cards and pressies, a few other gifts to open and some gorgeous flowers arrived which was such a beautiful surprise and really brightened my day. In the evening my family and I all went out for dinner which was lovely. The day after my birthday my dear friend visited which was so kind, and my celebrations continue this weekend.

The thing is, what I wanted most for my birthday is a body that functions. A normal life. A gift that money can’t buy. Even if I could just have one day off, my life would be made; a day without any illness so I could fully enjoy myself and ultimately have a break without having to think about medications, catheters and my stoma etc. However, despite making the most of the situation, even my birthday was crippled with stomach pain, gastro symptoms and the illness that I battle every day.

I don’t want this to be seen as not being appreciative because I could not be more grateful for everyone’s efforts, but good health truly isn’t valued until sickness comes.

Thank you to my friends and family for making my birthday so so amazing; your efforts, thoughtfulness, gifts, messages and visits absolutely made my birthday the best day I could have imagined and for that I really am grateful. 🌟

Dublin.

Last weekend, my friend Sophie and I had a mini-break to Dublin. We’ve been looking forward to it for so long, but as some of you know all too well, travelling with chronic illnesses, a wheelchair, a stoma etc comes with many added stresses. It was also the first time I’ve flown since having Stewie.

Before I’ve even left the house, I found packing extremely stressful. Prior to even having the chance to think about ‘normal’ things such as clothes and toiletries, I have my medical things to think about which are vital. Tablets (enough of them), sharps, sharps bin, GP letter, ileostomy supplies and catheters to name a few. Not only does it get to me having to think about all of these extra things which wouldn’t even cross my mind if I were healthy, it also takes up so much of my luggage space!

At the airport, assistance was booked. At Gatwick, the system worked flawlessly as it had last time, but it wasn’t so great at Dublin coming home. This left me feeling so stressed, as we were put on the plane last, with delays caused by things such as the ambi-lift to take us up to the aircraft door not being ready, despite it being booked when we first booked the holiday. It makes me so frustrated that I can’t do normal things; I can’t stand in the normal queue to board the plane, I can’t do the aircraft stairs like anyone else and a huge scene has to be made as I’m brought through the aisle of the aircraft on a chair.

Most of the things we did during our break were wheelchair accessible, despite cobbles and lots of hills on the way to them making pushing the chair quite difficult. We visited the Guinness Storehouse which was entirely accessible, as well as Dublin Zoo, Trinity College and Dublin Castle to name a few. We used a hop-on, hop-off bus tour which got us between the attractions and was wheelchair accessible, although when this got busy we struggled to get the wheelchair on and a few of the busses didn’t have ramps.

It was lovely to get away, but since getting back my body has completely crashed, making me feel like I need another holiday! We were unable to go for any longer than we did, but an extra night would have made our time a lot less jam-packed. It was a nice break, but since being home I’ve had severe stomach problems, making Dublin seem like nothing but a distant memory. The price we have to pay for having a few days of ‘normality’ really gets me down. For now, my life consists of cancelling plans I was really looking forwards to, spending my time napping on the sofa and relying on increased, regular pain killers to get through the day; to say I’m depressed would be an understatement.

My birthday coming up next week isn’t the best timing, but would it ever be with a body like mine? My family always try their utmost to make it special for me, and for that I’m eternally grateful. I just need my body to recover from this trip and everything else it’s going through at the moment, as it really is getting me down. If you’re thinking of visiting Dublin, I’d totally recommend it, but I can’t explain how, now more than ever, I wish my body worked… I’m not in a good place.

Glass Half Empty.

I really struggle to focus on the few things that I can do, yet spend my energy and time thinking about and mourning for all the things that I can no longer do; It’s a habit I just wish I could ‘snap out of’, but it’s not as easy as that. This infiltrates into every area of my life, so even the most positive times are tainted with negativity and down-heartedness.

Last week was Jeffrey’s birthday, and as the crazy dog Mum I am, I planned a birthday party for him, and on his actual birthday we took him for a trip to the woods. However, whilst I’m grateful I was able to get out in my wheelchair with my parents to do that, I hate not being able to chase along with him and to get to where I want to be in the woods rather than restricted to the few ‘easy access’ paths which really couldn’t be further from that if they tried. I’m always grateful for what I can do and when I have better days, but I always can’t help but turn my thinking to what I’m missing out on, what I can’t do and what else I would be doing if I were healthy.

As well as remembering to be grateful for everything I am able to do, I’ve been desperately trying to look on the ‘bright side’ and remain hopeful about things. However, after the last three years of relentless bad luck, deteriorations, hospital admissions and not being able to get back to Cambridge, it really is hard to have a constant positive outlook as my past experiences have all been negative.

I’m trying my best to remain hopeful, as some days hope is all I have, but it’s easier said than done.

Tired of being tired.

This week, more than ever, I am tired of being tired.

It’s hard to explain to someone on the outside just how debilitating fatigue is. It’s more than just feeling tired, it’s not being able to move from bed/the sofa, it’s my limbs feeling like lead, not being able to keep myself awake no matter what is going on, and it being so overwhelming I’m unable to do anything at all.

This past week I’ve had a few days where I have had some time not at appointments and so have wanted to get some fresh air and take Jeffrey out, things I may have previously taken for granted. However, the fatigue has been so crushing, I haven’t been able to do anything apart from listen to my body and sleep, or simply lie on my bed or the sofa. It doesn’t matter how much sleep I get, the fatigue is absolutely relentless; I have a whole nights sleep, sleep all day and am still ready to sleep again when nighttime comes back around. It really is no life.

There are various reasons which the fatigue could be due to. Firstly it could be Chronic Fatigue Syndrome which commonly occurs secondarily to chronic health conditions and with which I’ve been diagnosed – however, I know my “normal” and this is much worse than that. I think my anaemia and other deficiencies could have a role to play, as well as the thyroid abnormality which needs to be looked into, but I just feel my fatigue is too severe for it to be down to this alone. Also, my exhaustion has got this bad quite quickly, whereas I assume the deficiencies shown in my bloods have gotten worse over time, although they could of course be contributing to the tiredness.

Whilst I wait for the iron infusion I have brought myself ‘Feroglobin’ which I have started to try to help in the meantime but I have noticed no improvement as of yet. I understand, like with most things with being ill, there is no ‘quick fix’ although I’d give everything for there to be one. I can’t even express how debilitating the fatigue is, and how much it has been stopping me from doing; I don’t do very much, but having the little that I can do taken away is really hard to cope with.

Lost.

Do you ever just take a step back from things and feel totally lost in the situation, with absolutely no idea where to go from here? That’s how I feel right now.

As I mentioned in my last post, I’ve found out I’m severely anaemic, deficient in folate, with an abnormal thyroid reading, and so some other blood tests have also been carried out which I’m waiting for the results for. It has been agreed that I can have an iron infusion to top my levels up, but unfortunately I have to wait for a referral to haematology for that. Yet here I am, stuck in the middle, barely with the energy to move myself off of the sofa some days. I can start the folic acid tablets, although I’m not sure how much of it I’ll actually be able to absorb.

This week I also had my long awaited ‘Gastric Emptying Study’ at The Royal London Hospital, which I was so hopeful would give us some answers, or prove a diagnosis of Gastroparesis which we would be able to start managing. I had to stop all anti-sickness tablets for the test, meaning that I was back to throwing absolutely every single thing I ate back up. I went for the test on Tuesday, and within barely anytime at all I started to vomit, and was sick so much the test had to be aborted. I’m having to have these tests due to the vomiting, yet they aren’t suitable if you vomit… it just doesn’t make sense?! I’m not seeing the consultant there until the 29th November so I’ve got a long wait now, and I have no idea where we will go from here, everything just takes so long. My body is getting used to the strongest anti-sickness medication and I’m taking increasingly greater doses for it to have any impact.

Here I am, with no energy, sleeping for way more of the day than I’m awake for, with deficiencies I’m unsure how to correct and relying on strong tablets with severe side effects in an attempt to keep any food down. This isn’t how I imagined my life, this isn’t how things should be. UCLH seem to have hit a wall with trying to help me, and so now all my hope for the gastro side of things is with The Royal London and my appointment on 29th November – it can’t come quickly enough. Fatigue is horrendously debilitating, and I’m just unable to live my life like this. I’m always willing to help myself, but I genuinely just do not know which way to turn at the moment, everything feels like a losing battle.

I’m sure I’m not the only one who has felt like this, but if there is anyone else in a similar position I just want to let you know you don’t have to face this alone; my inbox is always open. I genuinely can’t see a way forwards from here, I just don’t know how things will get better, but I know I’ve got to keep going. However, at the moment, I’m lost.