The Future…

When most people think of the future, it causes a small knot in your throat and a feeling of uncertainty and dread to bubble within, mixed with excitement and anticipation.

At age 17/18/19, in the UK, you are expected to make very important decisions that will set you up for the future and get you started on your journey to adulthood. This is an extremely big responsibility to take on at such a tender age and is daunting for anybody. However, throw into the mix an unpredictable, debilitating chronic illness and a whole host of other complications crop up that make this experience an anxiety-ridden one, to say the least.

Since the age of 9, my one dream and goal has been to go to the University of Cambridge. I spent much of my teenage life working towards this goal to make it possible, but things became difficult when I became sick in the year before I was due to sit my GCSEs. It affected my grades, but I still did well achieving 6A*s and 4As, surpassing even my own, low expectations given the situation I was faced with. Despite this, I was disappointed.

I got into an amazing grammar school, one of the top state schools in the UK, and was overjoyed. Unfortunately, within 3 months I had been diagnosed with my second chronic illness: CVID, and my health hit a downward spiral. My attendance was so bad due to ill health that I was forced to leave and retake year 12 elsewhere. I was extremely disappointed.

Year 12 at my new school went okay-ish, and compared to my previous school year, I was flourishing. I took up Geography, having not taken it at GCSE and was even managing to outperform some of my peers! I seemed to be regaining my academic spark that I had once been so proud of. In the lead-up to AS’s, in which I was being examined in Maths, Further Maths and Geography, I was starting to notice that I wasn’t managing to keep up. I tried really really hard and studied as much as I could physically manage (which admittedly is not all that much), and felt very prepared for almost all of my 7 exams. Come results day, guess what? I was disappointed.

Where are you going with this?

Of course, everybody faces disappointment – it’s a harsh reality of life in this dog-eat-dog world.

Sooooo.. your point?

My point is that when there are factors beyond your control that prevent you from being able to reach your full potential, you can be left feeling very disappointed with your performance a lot of the time, especially when it determines your future. Often, people with chronic illnesses put a lot of pressure on themselves to live up to their ‘old self’ or fulfil social expectations they think they ought to meet. This can be hugely detrimental to one’s self-esteem. Additionally, the uncertainty of what hurdle is around the corner makes gaining any advantage now (especially academically) imperative.

I’m currently in the first term of year 13 and university applications are looming over me. I’m extremely unwell. Consequently, my dream of going to Cambridge has crumbled, despite having the required predicted grades. The unpredictability of my conditions, combined with this recent flare-up, means that the timing of entrance exams, interviews, personal statement deadlines etc just don’t work for me. To say I’m disappointed is an understatement.

Looking at universities has had a huge impact on my mental wellbeing recently, as I am forced to think about what I’ll be doing in the next 3-5 years. As anybody who knows me personally would be able to tell you, I’m somebody who relishes being in control. I like to plan things meticulously and know what I’m doing and when, what I’ll be wearing etc. I love to be organised. I fall asleep to an endless record of thoughts planning out anything important in my calendar over the next few weeks in the hope I will be able to see my commitments through (and to help me remember them).

Okay, so I’ve successfully made myself sound like a lunatic (it’s subjective, but I like to think I’m not). However, the reality of the matter is, planning no longer gives me comfort, but instead, great anxiety.

For me, moving to university is so much more than what the local clubs are like and whether the accommodation is super grotty or almost bearable. I have to consider moving hospitals so I don’t have to come back to London every four weeks for my infusion, I have to consider what the uni’s policy on disability is and how they accommodate missing coursework deadlines or potentially exams! I have to factor in that I may need to come home urgently and how I’ll do that and the cost involved etc. These are just a few of the extra stresses somebody with a chronic illness has to consider.

Naturally, when there are more factors to take into account, your options are more severely limited. Chronically ill people strive to be looked upon as somebody who is more than just their illness, but in situations like this, it can be really hard to even feel like you are more than just your illness when it seems to be making every decision on your behalf. The future is terrifying and about as impossible to predict as next week’s lottery result! Nobody is there to hold your hand or tell you everything will be okay, because, in all honesty, it may not be. It is comparable to staring into a pitch black hole and picturing yourself with an amazing job, great health etc, when in reality you’re more likely to be worrying something might jump out of it and give you an awful fright.

The most important thing to do is to get as much information about what you are planning to embark on as you can to try and put your mind at ease. Furthermore, do your best, even if you don’t feel like it is good enough. Things may not work out as you once envisaged, as I am learning the hard way, but you will find a path if you continue to trek through the boggy marshland, and we can only hope it leads someplace flat and dry.

Thank you for reading (unless you time travelled here without which case, congratulations and welcome to the future, pal).

Super-food Sunday: Classic Roast Dinner

Now I’m sure you’re all thinking “roast dinner?!! Super-food??!? Are you crazy?” and yes.. You’re correct; it’s not a ‘super-food’…… it’s a super-meal 😉 

For one day only, I have reinvented the definition of ‘super-food’ in honour of Mother’s Day. To me, a classic Sunday roast is the ultimate comfort food and is actually a well balanced meal! (Providing you don’t do what I do and eat about 32 roast potatoes). 

Today I have decided to use my energy reserves to treat my mum in return for all her awesome mumliness and the amount she has cared for and helped me get through recent months whilst my health has been at its worst! I have been very ill recently and I decided that today was a day for no complaints on my part (despite feeling awful), and a day to treat my lovely mummy, Karen. 

So, what’s on the ‘classic roast’ menu for today?

~ main ~

Roast Beef with homemade Yorkshire puddings, roast potatoes, cauliflower cheese, parsnips, roasted carrots and peas


mammoth meal! i’m so proud of my Yorkshires

~ dessert ~

Homemade crème caramel (served with strawberries)


not very photogenic, but certainly delicious

It was all so tasty and I’m proud that I managed it mostly without help, especially feeling so unwell! This ‘super-meal’ feeds your soul and your heart. For me it also evokes such good memories of my incredible roast dinners my mum has cooked throughout my childhood, which have always been my favourite ever! She said it was like she cooked it herself – so that’s good enough for me! I’m clearly my mother’s daughter 🙂

I hope all mothers reading this were appropriately treated today! Happy Sunday everybody. 

Super-food Sunday: Edamame beans

Edamame beans are my favourite thing right now! Little pods that contain nutty, sweet, creamy, slightly salty (providing they are lightly salted) green beans that have a lovely bite to them that just *POP* out of the pods to be enjoyed however you like them. Personally, my favourite thing at the moment is the salmon, edamame, baby kale and quinoa salad with Dijon dressing from Pret a Manger! So healthy and delicious!

Edamame beans are young soya beans. They are harvested before the bean hardens. 

They are naturally gluten-free, cholesterol-free and low calorie. They are an excellent source of protein, iron, and calcium. They are an incredibly good source of protein for those who are vegan or vegetarian. 

Many studies have suggested that increasing consumption of plant foods like edamame decreases the risk of obesity, type 2 diabetes, heart disease and promotes a healthy complexion and hair, increased energy, overall lower weight. Sounds like a super good to me that’s for sure!

The isoflavones (a type of compound called phytoestrogens) in soy foods have been linked to a decreased risk for osteoporosis. In addition, the calcium and magnesium in soy may help to lessen PMS symptoms, regulate blood sugar and prevent migraine headaches. 

Soy-food consumption has been associated with a lower risk of several specific age and lifestyle-related conditions and improving overall general health. 

The folate in edamame may help with depression by preventing an excess of homocysteine from forming in the body. Homocysteine can stop blood and other nutrients from reaching the brain and in excess, homocysteine interferes with the production of the feel-good hormones serotonin, dopamine, and norepinephrine, which regulate not only mood, but sleep and appetite as well. 

You can buy them from most supermarkets and they come ready to eat in pots. Or you can order them when you go to Japanese restaurants for a super healthy starter or side dish! They are great freshly steamed, served warm sprinkled with corse sea salt and a squeeze of lemon!

(Source – too much brain fog to use an accumulation of resources today, I hope you understand) 


First of all, I would like to apologise to those who check my blog regularly and have found there to be no new posts! I have been quite unwell over the past two weeks, but also quite busy and my blog has fallen to neglect! However, I am back now.

I feel as though frustration is a good title for this post as it is an emotion that is with me quite often. It’s an odd one.. It feels very strange to be frustrated. It’s like a combination of anger, despair, defeat, longing, disappointment and sadness all in one. You tend to feel like you are letting yourself down which can make you quite angry and sad, and you feel defeated and disappointed that self-improvement is not in your control. You can start to despair when your efforts are fruitless and then long for the day when you can finally start to feel and do better.

That’s how it feels for me anyway.

There are several things in my life that I feel frustrated about and they all stem from being ill. In itself it is frustrating because nothing seems to be making me feel any better. I have been vomiting for 2 weeks straight now, with on and off days for a few weeks prior to that. I had a gastric emptying study on Feb 15th which I am 99% sure showed I have gastroparesis, and yet the gastro team at my hospital have still not done anything! I have called twice now, finally getting somewhere (I thought) when the secretary put my results in the Dr’s tray and told me he would write or call. That was 5 days ago and still nothing. It has been almost 2 weeks since the examination and having lived with this awful vomiting for 2 and a half years now I NEED some answers!! (and medicine preferably!)

The above and also managing my CVID is something else that causes consequent frustration as it means I miss out on a lot of things – primarily my education! I frequently am too unwell to attend school which is so frustrating as I am doing my A levels and have aspirations to study Economics at Cambridge. At the moment we are discussing when is best for me to sit my maths As exams and how I can get extra support from the hospital for when I am absent for long periods of time (which is quite frequent). Due to the unpredictable nature of both of my health problems, I feel like I’m being so uncooperative when I say I’m not sure what is best or perhaps disagree with what they think is best, such as taking some of my maths I should take this year, next year. I’m not particularly keen on that idea as next year I will also have Economics and History as well as more maths anyway, and who’s to say I’m going to feel any better in myself next year anyway?

It is difficult to plan ahead when your health is so volatile and never know what could make you have an episode of vomiting or if you will catch an infection etc. Even planning three weekends ahead is difficult, let alone predicting how I will feel next year! It is impossible and so so frustrating!

Just a thought…

Having an immunodeficiency disorder and being in a support network with other people who have the same condition is a bit like living on a road full of period houses; lets say Victorian in style.


They are immaculately painted on the outside with reasonably well kept plant pots by the front entrance that only get a bit weary if the person goes on holiday. From the outside, they all look impressive and fine (in both senses), but inside there are problems with old pipes starting to leak, floorboards that are showing signs of rotting, a couple of cracks in the ceiling and ever-so-slight subsidence. 

However, the thing that makes it easier for each resident is that there’s a whole road of these houses that have the same/similar problems inside! That means each person can reassure you it’s not just you experiencing boiler issues and frequent power cuts because of outdated electric wiring and plumbing systems.. but most likely several other people have those issues too. And out of those people, it’s almost guaranteed at least one will have relevant details about a local handy men who can provide assistance!

Now think of it like this…

People with PIDs are a bit like this road of period houses. Pretty well maintained generally, unless we are feeling particularly rubbish (on vacation). How we look on the outside is often not a true representation of how we feel on the inside. Despite looking okay, we may perhaps not be fairing so well internally – whether physically or mentally – and be in need of some support from our ‘neighbours’ to sort out our problems, whatever they may be. 

The idea that each resident can help point the others in the direction of somebody who helped replace a radiator, or re-did their floors etc, is the same principle as being in any kind of support group. It enables you to learn from other people facing the same struggles so that you have an idea of what you’re up against and how best to go about sorting/managing the problems it creates for you. 

In both circumstances;

               the help and support is invaluable to each individual, and the common struggle unites them as a single body full of knowledge and experience in dealing with a multitude of challenges. 
Let me know what you think about this simile for what it’s like to have a PID and/or be in a support group; share your own if you have one!  

Super-food Sunday: Green Tea

In light of it being Chinese New Year tomorrow, this week’s feature is something used for centuries in Chinese medicine to treat a plethora of conditions: green tea. 

Green tea contains B vitamins, folate (naturally occurring folic acid), manganese, potassium, magnesium, caffeine and other antioxidants, especially catechins. 

These catechins have biological properties and are in fact anti-bacterial. They can kill bacteria in your mouth and improve dental hygiene, keeping your breath fresh. Some studies show that they can inhibit viruses like the influenza virus, potentially lowering your risk of infections. 

Allegedly, drinking green tea helps to boost the metabolism, aiding in weight loss. Also it can help to reduce cholesterol, treat cardiovascular disease, and ward off certain cancers and Alzheimer’s disease – helping you live a prolonged, healthy life. 

Green tea contains caffein (not as much as coffee, but enough to keep you alert without feeling jittery). It also contains the amino acid L-theanine, which has anti-anxiety and calming effects. Together, the substances help to improve brain functions and concentration throughout the day. 

It is said that green tea can also stabilise insulin levels in the blood, subsequently decreasing one’s risk of developing type 2 diabetes. 

It comes in many flavours and has a relatively mild taste. It can be used as a mixer in smoothies, served iced, or however you like it best! However, it is not advisable to put milk in it. 

So cheers from me; to green tea! 

Contains extracts from 

Super-food Sunday: Quinoa

Ah, “Quinoa”, that mispronounced cereal eaten by hipsters and health freaks. 

However you say it, the question is; do you consume it?


Well, you should. 

Quinoa (pronounced keen-warh) contains an abundance of vitamins and antioxidants that have health boosting properties! 

It’s been eaten in south America for thousand of years and was considered sacred by the Incas. 

It can be eaten hot or cold; in a salad, by itself or as a side, and even as substitute for white rice – making it very versatile. It’s packed with protein and fibre, making it perfect if you’re after something filling, but also super healthy! It has more fibre than any grains with similar properties, and contains all the essential amino acids we need. 

It is also gluten free!

It has a low GI, making it suitable for people with diabetes, but is high in carbohydrates.

You can get black, white or red quinoa. All types are packed with compounds such as manganese, folate, copper, magnesium, zinc, potassium and even contain omega 3 fatty acids and a trace of calcium and vitamin E! 

Whilst quinoa is very high in minerals, it also contains phytic acid which can partly prevent them from being absorbed. It is advisable to soak the quinoa before cooking to get rid of most of the phytic acid.

Quinoa contains large amounts of flavonoid antioxidants; including Quercetin and Kaempferol. These are plant antioxidants that have anti-inflammatory, anti-viral, anti-cancer and possibly even anti-depressant effects. When quinoa is left to sprout, these antioxidants become even more potent. 

There are some studies that suggest that quinoa can lower your metabolic rate and help stabilise your blood sugars, meaning it is good for weight loss. 

It is simple to cook:

  1. Put 2 cups of water in a pot, turn up the heat.
  2. Add 1 cup of raw quinoa, with a dash of salt.
  3. Boil for 15-20 minutes.

This is the most basic way to prepare your quinoa. It is available to buy in many supermarkets, and also online. It has a nutty flavour and a nice bite to it.

What is your favourite way to enjoy quinoa? If you’ve never had it, try it and tell me what you think. 

Quick Update

Hello everybody, little update as haven’t really uploaded anything this week but I’ve been very busy behind the scenes!

I’ve finally got all the information I need about the PIP benefit application and plan to start the application process soon. I have also been researching a university grant for people with disabilities. (All UK only as far as I know). 

Many people are not aware that the broad spectrum of PIDs are actually classified as a disability under the Disabled Act (in the UK), and therefore you can get help accordingly to cope with day to day struggles! It’s a very depressing process trying to mentally put yourself in the position of how you feel on your worst days and trying to note down how hard things are for you to undertake at those times, such as showering or getting dressed. However it’s also hopeful as at the end you may finally end up with a reward that can help improve your quality of life somewhat! 

If you need any information or questions, please email me at:

I have felt rather unwell this week; but on my better days I have been busy busy. Yesterday I had a solid half day at school of back to back lessons, then rushed home in time for my driving lesson which was TWO HOURS! It was my third lesson and my instructor took me on the dual carriageway.. I went up to gear 5 and was driving 50mph. Crazy! Very fun though. It’s so empowering to actually feel like you’re accomplishing something, as recently I’ve felt rather unconfident in my abilities (or rather inabilities) to focus and concentrate for a sustained period on things such as my studies or reading a book etc. It’s been a challenge but I’m enjoying driving so much!

I then had 2 hours of maths tutoring to help me catch up in prep for mocks next week (but also for my As maths exams this year as they are my only unreformed subjects). By the time I had dinner it was 9pm and I was completely exhausted! 

The relief that it is infusion day today is just unmeasurable! I hate doing them, but I’ve felt so dreadful for the past 5 days that I was almost tempted to bring it forward! Does everybody else get that? It must be pretty common to feel the lull before your infusion. 

Also, fun fact of the week;

The combined gratitude but also frustration when somebody tells you how well you are looking when in fact you often feel like you’ve just about scraped through surviving WW3 you’ve been so I’ll is because … *drum roll please*

… It is not actually the infection/illness that makes you look ill, it’s the action of the immune system! PID = no immune system function = looking peachy when really we just want to curl up in a ball and hibernate for 200 years! Mad, huh?!

Have a lovely weekend, and pop back on Sunday to have a read of this week’s Super-Sunday Post! 

Super-food Sunday: Blueberries

Now, blueberries have been highly regarded for their health benefits, but also under scrutiny because of their super-food status being questioned as another FAD. 

However, I can assure you that they have an abundance of vitamins and nutrients that are amazing for your health and also your immune system. They also are very low in calories and have a low Glycemic Index which helps to regulate blood sugars for those with type 2 diabetes. 

Blueberries are full of antioxidants and allegedly have the highest antioxidant capacity of all commonly eaten fruit and vegetables. They can be frozen for 3-6 months without this content being affected significantly, which means that even if fresh blueberries are too expensive or out of season; you can buy frozen! If price is no issue, it is recommended to buy organic blueberries as they are reported to contain more of the delicate antioxidants. 

A small study concluded that daily consumption of blueberries helps to improve the brain’s capacity to remember things and improves overall cognitive ability. 

1 cup of blueberries gives you 25% of your DRA of vitamin C – helping you to stay youthful and also improving your immune system. 

The antioxidant that gives blueberries their distinct colour, anthocyanin, is also responsible for improving heart health. Eating 3 servings of blueberries per week can help a woman to reduce her risk of heart disease. Possibly, this antioxidant may also be able to prevent the growth of cancerous tumours due to the free radicals it releases. 

Similarly to cranberries, blueberries are also able to help stave/fight off urinary tract infections. They both contain compounds which inhibit bacteria from sticking to the wall of your bladder. 

There is no recipe today, as blueberries are great alone, over yoghurt, with American pancakes, in a fruit salad or quite frankly HOWEVER YOU FANCY! 

Tuck in regularly and feel the benefits. 

Here’s some advice…

So, a while ago I wrote a post about the spread of germs (you can read it here). 

However, recently I have thought of some more nifty tricks to keep you from catching viruses from your family members, and also yourself! 

Tip 1


Write your name on water bottles you are drinking from! In my household we generally just drink bottled water. This means half empty bottles can end up accumulating.. The water is still fine to drink, but whose water is whose?? ESPECIALLY if one of my family members or I am sick, I like to write my name in sharpie pen (other permanent markers would be fine) on the water I have been drinking so that I know what water is mine and we don’t share by accident. I have a small family and sometimes write on my mum’s bottles too, but you could just write on your own so that way you know if it doesn’t have your name on it – don’t drink it!

Tip 2

STERALISE YOUR TOOTHBRUSHES REGULARLY! I recently learnt that when you are contagious with a virus or bacterial infection (especially throat), that the pathogens from your saliva and mucus can live in your toothbrush for two to three WEEKS! How disgusting?! For people with compromised immune systems this is a nightmare because it’s really easy to reinfect yourself! For everybody else (and for us) it would most definitely slow down your recovery time, and you are still at risk of reinfection! To avoid this, sterilise your toothbrush head in boiling water from the kettle each time you clean your teeth when you are sick! When you are well, I would advise sterilising around twice a week just to keep it hygienic! You should change your toothbrush every 3 months, but more frequently if you notice damage to the bristles or marks of other wear and tear. 

Tip 3

When you sleep, it’s common to dribble on your pillow.. Again, gross!! If you are sick this means all your germs are being dribbled into your pillow and living there ready for you to go and lay on again in bed the next night. I would recommend 2 sleeps on one side of the pillow and then flip it over to the fresh side with no dribble! Two more sleeps then change the pillow case! Changing your bedding regularly is important for personal hygiene anyway, but your pillow is particularly important as it is in contact with your mouth, nose and ears – the 3 most vulnerable places for germs to enter. A pillow protector is a good investment if you don’t have one, as it will absorb the saliva and can be washed/replaced easily – reducing the need to wash your pillow. HOWEVER, there is an essential pillow test that can help you to know when your pillow is due for a clean…

Give your pillow a shake, and then stretch out one arm and place the pillow over it (so your arm intersects the long end perpendicularly). If the pillow sags at both sides, I’m afraid to say it’s full of all kinds of nastiness including dead skin cells, the dreaded dribble(!), sweat, and all sorts! Time for a wash!!!

Pillows should be replaced every 2-3 years. 

Tip 4

Wear a face covering if multiple members of your family are ill or if you are ill. You may be conscious of looking like a fool, but better safe than sorry!

Tip 5

There are some places that you may not remember to disinfect regularly, such as the steering wheel of your car or your keyboard at work! For quick cleaning use some antibacterial surface wipes such as the ones by Dettol.  

Perfect to carry around with you to sanatise all your work surfaces! (AND YOUR STEERING WHEEL!!)*
If I think of any other tips I will update this post, but I hope these are helpful to you. 

*updated 10/02/16 after realising how few people think to disinfect their cars and how many germs live on your hands, and thus get transferred to your steering wheel to live until you pick them back up again!