Thursday, 25 April 2019

Does Chronic illness have it's positives?

Too often, more than not, when we think about life with chronic illness/es when concentrate on the negatives as they are what automatically spring to mind. We don't allow the prospect of there being
any sort of positives where chronic illness/es are concerned as we are too focused on the negative aspects of how it/them have affected our lives. We think about things, such as: what we've missed out on, how different our life is to those surrounding us who's lives have not been touched by illness, the things we can't/struggle to do, what we've lost to our illness/es, the horrible physical symptoms we feel, the isolation we feel, the mental health problems we may have to deal with as a consequence of our illness/es. For too long I lived life believing that chronic illness was something which only presented itself with adversity, I never allowed myself to entertain the possibility that any positive may exist in relation to such a seemingly negative thing.

One day whilst sitting in hospital, feeling sorry for myself, I decided to make an attempt to put together a list of positives which may come alongside chronic illness/es. It felt strange at first attempting to put together such a list because I'd conditioned myself, for so long, to be of the belief that only negative aspects of illness existed.

Since making this list I have found that my outlook on my chronic illnesses as well as my outlook on my life in general has changed. It didn't happen quickly, it took a bit of time but I kept re-looking at the list and reminding myself that it's not all negative.


  • You learn to quickly cherish the small things in life: with chronic illness you find the smallest things in life bring you joy. Focusing on what you can do instead of what you can't do can really help you achieve this. For example saying "I can't run but I can walk" or "I can't eat peanuts but can still make some tasty allergy-friendly treats" can really give you a positive outlook on dealing with chronic illnesses. You start to find that you enjoy the smaller things in life such as going out when you can, doing things for yourself when you can. 
  • You quickly come to conclusions about who should be in your life and who you need to rethink about: living with chronic health problems can be really isolating. With some people I've found that the first few times they learn that you're unwell or, for example, in hospital, their general reaction tends to be along the lines of "Are you okay? Is there anything I can do?" etc. As time progresses and you end up unwell a multitude of different times many people stop asking. Many people will stop making attempts to make plans with you if you've had to cancel multiple times as a result of your health problems, in spite it not being your fault they seem to tire, relatively quickly, of asking for there to be any sort of potential of you cancelling. Although this is a horrible thing to endure and makes you feel even more isolated it does have it positives that you find out who the people that will be there for you even when things are going tough and aren't just there in your glory times. 
  • You find yourself becoming more motivated and determined in life: when living with chronic illnesses often all you want is a sense of normality in life, to do things that other people without chronic health problems take for granted. I have found that having chronic health problems has really helped me to be a great deal more motivated and determined to achieve the things I want to in life. I find that I also am motivated and determined to prove people wrong, what I mean by this is to show those that say "you can't do that" that I can and I will do it.
  • Your achievements seem bigger, no matter how small they may be: most people spend their time celebrating the big things in life: graduation, getting a job, getting married, starting a family etc. however, when living with chronic illnesses you find yourself celebrating the smaller things in life. Things such as: going for a shower, cleaning the house, doing self-care, getting out and about can be a massive fete and you should celebrate as should. Instead of focusing on what big celebrations you're missing out on try to celebrate your smaller achievements. I find making myself a list of goals with small manageable steps can be of great help, writing them down and ticking them off as you achieve them can give you a real sense of achievement that you may not otherwise feel. 
  • You make an attempt to live each day to the fullest: you begin to value the things you can do in life when you face periods of time where you can't do those things. You find yourself making attempts to live your life to the fullest potential that you can and trying to make the most of the good days you may have or the days where even if you have symptoms those symptoms are heightened. You learn coping strategies to manage day to day in spite of having symptoms and in turn use this to make an effort to live your life as best as you can. 
  • You come across some amazing people: in the chronic illness community there is such a vast range of people you come across. The good thing is you come across very likeminded individuals who have the same sort of outlook on life as you and understand the struggles you face because they themselves face their own battles. Sometimes the best people in your life can be the ones that you've come across as a result of fighting health battles. 
  • You find yourself taking each day as it comes: you try to have the outlook on life that "today may be bad, maybe even the worst day you've ever experienced, but that doesn't mean that tomorrow is going to be bad too". You start to learn to take things minute by minute, hour by hour and day by day and not be begrudged to the fact that you may be struggling as you try to remember that whilst things are difficult just now they won't be this way forever. 
  • You tend to be a more understanding person: living with chronic illness gives you a better sense of empathy to other people's problems. You also tend to be more understanding towards people's actions and behaviours. For example if someone doesn't message you back you may be more inclined to believe that that person may have personal things going on and in turn empathise with them instead of automatically assuming "they are ignoring me". This in turn can really benefit your relationships. 
  • You are a true warrior: you really are a warrior, however not just because of the battles you face but by the amazing person you are. Chronic illness is NOT who you are, it is part of what has shaped you/continues to shape you as a person however it is not the person you are. You have so many more qualities and are an amazing person in spite of your chronic illness/es.

Thursday, 18 April 2019

What are my feeding tube essentials?

As someone who's had feeding tubes for a while I know just how tough it can be. You feel alienated, abnormal, weird etc. as it's not the norm to have a feeding tube. It can cause your confidence to plummet because you're "different" from those surrounding you. I know when my doctors first introduced the idea of placing a feeding tube and in turn ending up with my first NG tube I was clueless as to it all. I found it a real struggle to begin with and didn't have any clue on how to adapt to my "new life" with a feeding tube. This uncertainty in turn increased my anxieties surrounding my attempts of living with a feeding tube and make the process substantially more difficult. I'd hate anyone else to feel as confused and uncertain as I did after initially having my tube placed. I feel this level of uncertainty in turn creates you to feel in general worse about the prospect of having a feeding tube and creates a more negative relationship with your feeding tube.

Feeding tubes can be difficult to live with, in particular really difficult to adjust to, particularly, in my opinion, nasal feeding tubes as on top of all the other feelings and instances surrounding feeding tubes you have to deal with other people's stares and sometimes narrow-minded opinions. Although feeding tubes can be hard they have positives and can really help give you back a quality of life that you may have been living without/missing.

This is a list of different feeding tube essentials I've put together during my thus far 3 years with a feeding tube. I personally have experience of NG (nasogastric), NJ (nasojejunum) and a straight J-Tube/jejostomy feeding tube. I lived for 3 years with an NG tube after which I had my straight J-Tube placed. I hope this list helps give some reassurance to anyone who is facing the prospect of needing a feeding tube or even if you've had one for a short/long period of time but are still finding your bearings with it.

Tubie pads

If you have a surgically-placed feeding tube then Tubie pads are a lifesaver! They're thin pieces of material that come in a multitude of different fabrics with different designs/colours etc. They're handmade, usually with a lot of love and care, and are sold via independent sellers. Tubie pads serve a few different purposes: to collect any drainage from your feeding tube site which in turn stops it ending up on your clothes, to reduce any granulation tissue and to make you feel better about your feeding tube. They're a great way for kids to feel more included in the handling of their feeding tube/s as they can select the Tubie pad they want to wear that day, it takes away the fear of having a feeding tube. They're beneficial for adults too and make having a feeding tube even that little easier.

I buy my Tubie pads off a lady called Amy Duncan-Dehn who runs her own Facebook group for her small business 'Tuberific Tubies! GTube & Trach Pads'. Amy's Tubie pads are of very high standard, good quality that last a long period of time (I bought my first log of Tubie pads off Amy a year ago and they're all still in the same condition they were when I first bought them with no sign of wear and tear, even going through the washing machine and tumble dryer), countless different fabrics and designs and very cost efficient. Amy makes individual Tubie pads however also does bundles from time to time which work out to be usually $0.50-$1 per Tubie pad. Amy also ships internationally (she lives in the USA however I am in the UK and she sent me Tubie pads with the postage from the USA-UK only being $10 for 25 Tubie pads! Including postage my first bundle of 25 Tubie pads was $35.90 and 24 Tubie pads was $34, so great value for money!

The link to Amy's Facebook group is: https://www.facebook.com/groups/269539526562746/



















Tubie clips 

Tubie clips are pieces of fabric attached to a clip. You put the clip onto clothing and then put the tubing into the piece of fabric. Tubie clips purpose is to: stop your tubing getting tangled up and also minimises the risk of tripping over the tubing which in turn would result your feeding tubing being tugged hard on which can be quite painful and may potentially pull your tube out your feeding tube stoma. Tubie clips come in a whole host of fabrics with different colours and designs on them. They can really help take away how daunting feeding tubes can be, they are great for children as they can be more involved in their feeding tube by picking out a tubie clip to use, even for adults they can make things even just a little easier.























Backpack 

If you're on continuous feeding or feeding that runs throughout the day having a backpack can be a real lifesaver! So many backpacks exist with different designs, something to suit absolutely anyone. For my my personal favourite type of backpack is by the company 'Vibedration'. They have a whole array of different backpack styles in several different sizes. The thing I love the most about Vibedration's backpacks is they have a hole in the backpack where you can feed your tubing through instead of, like with other backpacks, having to place the tubing out with the zip of the backpack.




Hole in the backpack for tubing to go through























Mortar and pestle 

I use a mortar and pestle to crush my medication to put it through my feeding tube. I find this grinds the medication up very finely so doesn't block my tube which is the problem I've faced with pill crushers in the past.



Dressings/tape 

These types of dressings/tape work well for nasal tubes (to stick them to the face) but also to tape up the a surgical-tube as well as covering the tube site itself with the tube in situ if a surgically-placed tube. When using tape a lot on your face these are 3 dressings/tape I've found work the best for me:




Hypafix dressing is really good for allergy-prone skin. I find it's one of the least harshest dressings, particularly on the face. It's very soft and the doesn't have too stubborn adhesive so is quite gentle on the skin. The tape is really easy to peel off and isn't painful coming off. When using Hypafix on my cheeks when I had NG tubes I found it didn't leave me cheeks feeling raw and didn't sting coming off.

Hypafix can be bought here: https://www.quickfirstaid.co.uk/hypafix-dressing-retention-adhesive-sheets
 Tegaderm dressing is great for covering your feeding tube stomach and tube. I find this is great to use when out and about at the beach to stop sand entering your feeding tube site as well as when going to the swimming pool to reduce the likelihood of yourself ending up with an infection.

Tegaderm can be bought here: https://www.amazon.co.uk/TEGADERM-FILM-Dressings-6cm-7cm/dp/B01N9QHQDW/ref=asc_df_B01N9QHQDW/?tag=googshopuk-21&linkCode=df0&hvadid=309964069570&hvpos=1o1&hvnetw=g&hvrand=12829812929194738583&hvpone=&hvptwo=&hvqmt=&hvdev=c&hvdvcmdl=&hvlocint=&hvlocphy=1007377&hvtargid=pla-561516672606&psc=1


Duoderm is a very soft dressing that is easy to remove to the skin. I find that it leaves no problems as the resort of taking it off and on the skin again and find it works the best for my skin. It's very soothing on the skin and doesn't result in the skin ending up raw when placing it on and off.

Duoderm can be bought here: https://www.farmaline.uk/health/order/duoderm-10cm-x-10cm-5-items/?gclid=Cj0KCQjwwODlBRDuARIsAMy_28U3j5xMGjui_GVUqztEDFr9OSZqa7ll7Gs_17VqI9Uec1ZIXye5WEUaAt1TEALw_wcB



Sterile water 





Sterile water is a great way to clean around your surgically-placed feeding tube site. It's sterile on the
skin and can be found in bottles as well as sachets. Definitely a must have when cleaning around your site.








Gauze





Gauze is absolutely perfect to use in order to clean around your surgically-placed feeding tube stoma accompanying the sterile water mentioned above.


Another use for gauze if
you have a surgically-placed feeding tube then placing gauze around your feeding tube site can really help reduce the amount of gunk that is present from your feeding tube. It's very soft and gentle on the skin and also helps to reduce any drainage as the result of an infection.






Sunday, 14 April 2019

Plamil Foods Love Hamper Review

When living with food allergies there are many limitations you find yourself facing. One of those is that when you feel in the mood for something sweet it's not as simple as going to a shop and picking up any bar of chocolate that catches your eye and you think sounds tasty, it involves a lot of checking the ingredients for the allergen/s itself/themselves and in some cases watching out for any "may contain" warnings on the produce as well. Oftentimes you're left feeling disheartened upon picking up something that looks super tasty only to find that it contains the thing/s you're allergic to. Very few companies exist which are dedicated to catering for those who live with allergies. I have come across a few in my years of living with allergies and anaphylaxis and one of those is a company called 'Plamil Foods'.

About Plamil Foods

From their website Plamil Foods say:

"We passionately believe in producing food that is made to the highest standards possible. We are more than a 'brand', as we actually make products in our own factory, giving us control over every aspect of production resulting in tasty food for all, supplying consumers, retailers, wholesalers and food catering / manufacturing facilities worldwide.

We think our customers should be able to enjoy food, knowing that every care is taken whilst in production, but also have complete assurance about both the purity of ingredients that goes in to making a product, as well as assurance that no other ingredient is present as well."

Plamil Foods makes a variety of different products including: 


  • Chocolate that is free from: dairy, peanuts, nuts and gluten 
  • Chocolate spreads that are free from: dairy, peanuts, nuts and gluten 
  • Soya milk that can be used as an alternative to dairy products 
  • Mayonnaise that is free from: dairy, eggs and gluten 
  • Chocolate hampers featuring a variety of their products 
  • Seasonal items (i.e. Easter Eggs) that are free from: dairy, peanuts, nuts and gluten
Reviews of items received


The packaging that the 'Love Organic Hamper'
comes in




Upon enquiring with Plamil Foods they were a very friendly company who decided to do a collaboration with myself on some of their products. The item in particular I was sent was their 'Love Organic Hamper'. Their website states that the product is "perfect for Birthdays, Anniversaries and Valentine's". The product came in a white box and upon opening it the inside was purple with their logo, it also contained lots of red shredded tissue paper which really amplifies the idea that this box would make the perfect gift for someone you love, particularly for Valentine's. The hamper is free from: dairy, milk, gluten, peanuts and nuts.








The inside of the 'Love Organic Hamper'
Upon lifting the tissue paper I was greeted with a multitude of different products. Before being sent the hamper I was unsure of what it contained and was pleasantly surprised with the amount of products contained within the hamper. The hamper contains:

  • Love heart gift box of milk alternative chocolate hearts 
  • 2 chocolate spreads (milk alternative and dark chocolate)
  • 7 chocolate bars (milk alternative, white alternative, tropical orange, intense mint, perfectly dark, extra dark and coconut blossom) 

The first thing I tried was their 'So Free Milk Chocolate Alternative Hearts'. These are free from: dairy, milk, gluten, peanuts and other nuts. The outer packaging was really colourful in nature and was tied together at the top with a little gold ribbon which was a really cute touch. Absolutely perfectly themed for Valentine's Day, or even just sending to someone you really appreciate in life. Opening the box there was a plastic bag inside it, I appreciated this as I feel it would help keep the chocolate for longer. There were approximately 15 - 20 chocolate hearts inside which were roughly 1 inch in height in the shape of a heart. On trying the chocolate hearts they were easy to bite into, a good consistency, not too hard but not soft either. They tasted really nice. The issue with some free from products is they don't taste anything like normal milk chocolate however I personally felt these had similarities to normal milk chocolate and were something that I definitely felt I could enjoy. They were nice to sit melting in the mouth and didn't become too cakey like some chocolates can when eating them. They definitely had a moreish taste to them and my only problem with them is I wanted to sit and eat all of them in one sitting!


The next item I tried was their 'So Free Organic Milk Alternative Chocolate Spread'. This product is free from: dairy, milk, gluten, peanuts and other nuts. The first thing I noticed is the jar is 275g which is a really generous size. As soon as I opened the jar I was hit by the lovely smell of the spread, I was very keen to taste it after catching the smell. On trying it at first I tried it on it's own but then also tried it on toast, I also decided to mix things up a little and tried some on banana. I feel this is a chocolate spread which really goes with a multitude of different things and tastes great on different things. For being a free from dairy product it has a really lovely taste as oftentimes my problem with free from dairy products is that it hampers the taste of the product but I found this chocolate spread had a very unique taste that tasted lovely. The chocolate spread is very smooth and is melt in the mouth.



The next product I tried was the 'So Free Organic Rich Dark Chocolate Chocolate Spread'.  This product is free from: dairy, milk, gluten, peanuts and other nuts. Like the 'so free organic milk alternative chocolate spread' the product was 275g in total. Similarly to the above mentioned product the chocolate spread was very moreish. I do however feel that you will either love the product or dislike the product, this has nothing to do with the quality of the product but more linked to dark chocolate being an acquired taste. I personally like dark chocolate so found myself really enjoying the chocolate spread. Again the taste did not suffer as the product is free from which is what you really want out of a free from product, you want it to be a safe product for you/your child to consume however you don't want it to jeprodise the flavour of what you're consuming. Similar things applied to this product than the one mentioned above, I just found the product to be s bit richer in flavour than the other one.




The final items I will be reviewing are Plamil's 'So Free Organic Chocolate Bars'. In total their were 7 different flavoured chocolate bars, all different and varying flavours, something to really suit anyone's taste. The chocolate bars are 80g each in total. They are free from: dairy, milk, gluten, peanuts and other nuts. The flavours are: 'So Free Organic Dark Chocolate Sweetened with Coconut Blossom Sugar', 'So Free Organic Dairy Free White Chocolate Alternative', 'So Free Organic Intense Mint Dark Chocolate', 'So Free Organic Extra Dark Chocolate', 'So Free Organic Perfectly Dark Chocolate', 'So Free Tropical Orange Organic Dark Chocolate' and 'So Free Organic Dairy Free Milk Chocolate Alternative'. 

  • So Free Organic Dark Chocolate Sweetened with Coconut Blossom Sugar: This personally was my favourite bar out the seven. It tasted so good! The chocolate was very moreish and I ended up consuming the entire bar in one sitting! Despite it being dark chocolate it definitely didn't taste like it, it had a sweet taste (just the right balance of sweet, not too sickly). The chocolate definitely didn't taste like free from chocolate. I usually feel free from chocolate has a very odd often unappetising taste to it however this bar was the perfect mix of milky tasting and coconut. 
  •  So Free Organic Dairy Free White Chocolate Alternative: Like the coconut version this chocolate could easily be mistaken as a normal bar of chocolate as it didn't taste like free from chocolate at all. It was very melt in the mouth and tasted very unique however in a good way. The bar was easy to eat and was never to sickly. Only problem was I wanted to eat the whole bar then and there!
  • So Free Organic Intense Mint Dark Chocolate: In spite of this being dark chocolate the mint taste very much outweighed the taste of dark chocolate. The chocolate felt very refreshing to eat and like the others was great in taste and wasn't too sweet to eat. I would definitely recommend to anyone who enjoys chocolate and mint. I personally would liken it to an After Eight (as most After Eights unfortunately now carry with them a may contain warning for nuts and peanuts which means those allergies to peanuts and other nuts miss out). 
  • So Free Organic Extra Dark Chocolate: I found this chocolate more time-consuming to eat than the previous 3 chocolate bars mentioned above however this wasn't linked to it tasting bad or being of bad quality, it was down to myself finding dark chocolate more difficult to consume in large quantities. In spite of this the chocolate was still very tasty. If you like dark chocolate I would recommend this bar as it tastes just like other brands that sell dark chocolate, once again the free from stance of it does not hamper the taste of it. 
  • So Free Organic Perfectly Dark Chocolate: Like the extra dark version of the chocolate I wouldn't recommend this to people who don't like dark chocolate as it's definitely an acquired taste. It's not as strong tasting as the extra dark version mentioned above however it's still a very pungent taste (in a good way). The chocolate was very melt in the mouth and didn't taste like free from chocolate normally tastes of. 
  • So Free Tropical Orange Organic Dark Chocolate: In spite of this, again, being dark chocolate, the overall taste that comes through is the tropically orange taste that this chocolate bar has. It's a very nice and sweet tasting bar of chocolate that isn't too sickly and is easy to eat. Would definitely recommend this product to anyone who enjoys tropically orange tasting things. 
  • So Free Organic Dairy Free Milk Chocolate Alternative: The free from status of this product definitely doesn't hamper the taste of it. It still tastes very milky and is a melt in the mouth type of chocolate that carries with it a great taste. It's the same type of chocolate as their 'Love heart gift box of milk alternative chocolate hearts' and just like those the product were easy to bite into, a good consistency, not too hard but not soft either. They tasted really nice. The issue with some free from products is they don't taste anything like normal milk chocolate however I personally felt these had similarities to normal milk chocolate and were something that I definitely felt I could enjoy. They were nice to sit melting in the mouth and didn't become too cakey like some chocolates can when eating them. They definitely had a moreish taste to them and my only problem with them is I wanted to sit and eat all of them in one sitting!
Prices

Love Hamper: £26, can be found at: https://www.plamilfoods.co.uk/hampers/love-organic-hamper 
So Free Milk Chocolate Alternative Hearts: £3.49, can be found at: https://www.plamilfoods.co.uk/so-free-seasonal-chocolate/so-free-organic-love-heart-gift-box?cPath=16&
So Free Organic Milk Alternative Chocolate Spread: £3.15, can be found at: https://www.plamilfoods.co.uk/spreads/organic-alternative-to-milk-chocolate-spread?cPath=4& 
So Free Organic Rich Dark Chocolate Chocolate Spread: £3.15, can be found at: https://www.plamilfoods.co.uk/so-free-chocolate-spreads/organic-rich-dark-chocolate-spread?cPath=4&
So Free Organic Dark Chocolate Sweetened with Coconut Blossom Sugar: £2.75, can be found at: https://www.plamilfoods.co.uk/so-free/organic-fairtrade-chocolate-sweetened-with-coconut-blossom-sugar?cPath=15&
So Free Organic Dairy Free White Chocolate Alternative: £2.75, can be found at: https://www.plamilfoods.co.uk/so-free/organic-dairy-free-white-chocolate-alternative?cPath=15&
So Free Organic Intense Mint Dark Chocolate: £2.75, can be found at: https://www.plamilfoods.co.uk/so-free/dairy-free-organic-dark-mint-chocolate?cPath=15&
So Free Organic Extra Dark Chocolate: £2.75, can be found at: https://www.plamilfoods.co.uk/so-free/extra-dark-organic-chocolate?cPath=15&
So Free Organic Perfectly Dark Chocolate: £2.75, can be found at: https://www.plamilfoods.co.uk/so-free/fair-trade-organic-dark-chocolate?cPath=15&
So Free Tropical Orange Organic Dark Chocolate: £2.75, can be found at: https://www.plamilfoods.co.uk/so-free/tropical-orange-organic-chocolate?cPath=15&
So Free Organic Dairy Free Milk Chocolate Alternative: £2.75, can be found at: https://www.plamilfoods.co.uk/so-free/organic-fairtrade-dairy-free-milk-chocolate-alternative?cPath=15& 

  
Value for money 

Overall the hamper costs £26 however buying it as a hamper instead of the individual products saves you £3.04 as in total if bought individually the total price would be £26.04. I personally feel that the hamper is great value for money! Even buying their individual products without the hamper I feel the products are good value for money as free from things tend to be very expensive, I feel that Plamil Foods gives a service in which good quality is able to be obtained for a good price. 

Plamil's website can be found here: https://www.plamilfoods.co.uk/ 
Plamil's Facebook page can be found here: https://www.facebook.com/PlamilFoods/

Items to give as Easter gifts instead of edible things



Easter is one of those celebrations where often those with different dietary requirements as well as those who struggle to eat enough/at all are left not be, properly, catered for. When you're struggling with your own/your child's medical needs you are faced with a whole host of problems without also struggling with different places not catering to a host of different problems which may result in being unable to consume oral products. In the recent months I've seen lots of different varieties of Easter eggs available within shops as well as to order online. There is such an enormous selection of eggs this year, something to suit everyone, or so the common misconception goes. Those with dietary requirements/difficulties with eating (due to a multitude of different reasons) are often left feeling left out even more so than they normally do. 

In a way it's understandable as to why companies often don't think to cater for those who may face problems consuming normal chocolate eggs. When you live a "normal" life where you're ability to consume some/any food then you take that ability fore-granted and the you don't really give it a second thought, you feel it's a "given" that other people can enjoy Easter treats, just like those who don't face dietary requirements.  I've compiled a list of different non-food items that could be given to someone instead of giving them an edible egg, this ensures that no one is left out at Easter and even those with special dietary requirements don't have to go without. I will split the next bit into 2 separate lists, one for babies/younger children and one for teenagers/adults as even older people would love to be thought of on Easter (A unique idea could be to make up a package with various different items contained within it that can be catered for the person's age/gender/likes/dislikes etc.):

Babies/Younger children
  1. Clothes
  2. Toys 
  3. Sensory items 
  4. Glow sticks/bracelets/necklaces 
  5. Balloons (ensure child isn't allergic to latex if using latex balloons)
  6. Bubbles
  7. Stickers 
  8. Temporary tattoos 
  9. Colouring pencils/pens/crayons/marker pens 
  10. Pencil case
  11. Erasers 
  12. Pencil toppers 
  13. Slinky 
  14. Coins 
  15. Finger puppets 
  16. Notebooks 
  17. Colouring books 
  18. Book 
  19. Educational items
  20. Bouncy balls 
  21. Bunny ears 
  22. DVD 
  23. Toy jewellery 
  24. Cuddly toy 
  25. Play makeup 
  26. Craft activities 
Teenagers/adults 

  1. Money 
  2. Sensory items 
  3. Pencil case
  4. Colouring pencils/pens 
  5. Colouring book 
  6. Craft activities 
  7. Notebook 
  8. Makeup
  9. Makeup bag
  10. Subscription to a video game they play 
  11. Giftcard 
  12. Makeup 
  13. Book 
  14. Bookmark
  15. Jewellery 
  16. Perfume/aftershave
  17. Clothes 
  18. Toiletries 
  19. Inspiring quote items 
  20. Pillow 
  21. DVD 
  22. CD
  23. Hand sanitiser 
  24. Purse/wallet
  25. Handbag/backpack  
  26. A trip out somewhere

Sunday, 28 October 2018

All About Adrenal Insufficiency

I am starting a new blog series where I will be writing out a "survival guide" for living with the conditions I live with. In this blog I will be focusing on Adrenal Insufficiency. *Please not, I am not a healthcare professional, I'm only using my experiences of living with these conditions and therefore anything I say should not replace your healthcare providers advice and recommendations*.

I was first diagnosed with adrenal insufficiency in April 2015. I was diagnosed by the use of a "short synacthen test". This is a test where they take a sample of your blood, inject you with a dose of synacthen and take a sample of your blood again, 30 minutes later. They compare the 2 samples to see the difference between the level of ACTH.

Two types of adrenal insufficiency exist, primary and secondary. Primary adrenal insufficiency is also known as Addison's Disease, it is not reversible as it's the body that is faulty. The second type of secondary adrenal insufficiency, this type is where another condition has to have occurred in order for the symptoms to develop.

My adrenal insufficiency is secondary adrenal insufficiency. Due to my brittle asthma and anaphylaxis, throughout the course of the years I have had a large amount of Prednisolone (a steroid medication). At one point I'd been on a very constant, high dose of Prednisolone due to my asthma and anaphylaxis symptoms. Each day the body produces 7.5mg of it's own, natural Cortisol (naturally-occurring steroid within the body). If you take over 7.5mg of steroids your body realises and due tot there being "artificial steroid" within the body it doesn't need to produce it's own, if this goes on long enough it essentially puts the adrenal glands to sleep and sometimes they don't recover instantaneously. 

Living with adrenal insufficiency can really become scary. The body requires cortisol to properly function and without it you risk going into "adrenal crisis". This is a potentially life-threatening situation which can be fatal. Usually people are placed on steroid courses to counteract their body not having enough cortisol.

The main symptoms of adrenal insufficiency are:
  • Hypoglycaemia 
  • Weight loss
  • Dehydration 
  • Disorientation
  • Nausea
  • Vomiting
  • Weakness 
  • Tiredness 
  • Dizziness 
  • Low blood pressure 
  • Cardiovascular collapse 
  • Muscle aches
The main symptoms of adrenal crisis are
  • Extreme fatigue 
  • Weight loss 
  • Decreased appetite 
  • Hyper-pigmentation 
  • Low blood pressure 
  • Fainting 
  • Salt craving 
  • Hypoglycaemia 
  • Nausea
  • Vomiting 
  • Diarrea 
  • Abdominal pain 
  • Muscle and/or joint pain 
  • Irritability 
  • Depression 
  • Loss of body hair 
  • In females loss of sex drive
This is not a complete list of all the symptoms of adrenal insufficiency or adrenal crisis but is a list of the main symptoms. Not everybody gets all of these symptoms, some may only have 1 or 2 symptoms. If there is any doubt that you may be in adrenal crisis you should seek emergency medical advice. Adrenal insufficiency is treated by taking steroid medications, if you find you're unable to take your dose you should seek emergency medical attention.

It would be a good idea to tell your family, friends, place of work, education supplier etc. about your adrenal insufficiency as it can leave you disorientated which may impact on your ability to seek help. If you were to collapse someone would be able to tell the medical professional/s about your adrenal insufficiency and they will consider if your symptoms fit adrenal crisis. It also could be a good idea to get a medic alert, many companies do stylish, classy, any gender alerts, it can really do the talking for you if you're unable to.

Here's a few sources of information if you've been diagnosed with the condition:

Addison's Disease Self-Help Guide: https://www.addisons.org.uk/
Adrenal Insufficiency United: https://aiunited.org/
Adrenal Insufficiency/Addison's Disease: https://www.facebook.com/groups/10322336355/?ref=br_rs
Adrenal Insufficiency Support: https://www.facebook.com/groups/184620951620985/
Secondary Adrenal Insufficiency Support: https://www.facebook.com/groups/100858467144753/
Woman's Adrenal Insufficiency Support: https://www.facebook.com/groups/1550015248576508/

What is the Teal Pumpkin Project?

As Halloween night dawns on us some people may have come across something called the Teal 
Pumpkin Project. Many people will think it's just a nice idea to have a pumpkin that's different to the "normal" orange colour however to many people living with issues related to food it holds a different meaning. The Teal Pumpkin Project was designed to allow inclusion on the amazing holiday that is Halloween. Halloween should be a fun period of time where kids and adults alike can enjoy some spooktacular fun. Children with issues which may mean they cannot eat, have a limited diet, need special accommodations etc. face being isolated from other children as they cannot enjoy Halloween to the same extent children who don't face difficulties with food and/or eating do. Having any medical condition, special need etc. is difficult enough, you face being left out when it comes to holiday season and parties because many people either decide not to accommodate for these requirements or, they simply do not think to accommodate for them. I can completely understand the not thinking part as before I was diagnosed with food allergies I never once considered that what I enjoy eating could be harmful to other people and until I lived with with a feeding tube I never realised just how difficult it can be to live life without eating and/or drinking. It can really leave you feeling alone and remind you of how different your life is to other people, adults struggle with this and I can only guess it must be harder for children, particularly young children, as they don't carry the same level of understanding about their condition/s that someone older does. Can you imagine being extremely excited about going out Trick or Treating but feeling your stomach sink when you realise that many people won't be inclusive of you? Kids with food allergies feel disappointed most of their candy stash will have to be taken away from them due to the risk it poses to them. Kids who cannot eat will feel disappointed on realising many people still only have candy treats. Children who struggle with food aversion won't necessarily want to eat the treats they've obtained from going out Trick or Treating etc. The Teal Pumpkin Project encourages people to have a selection of treats that are non-food related. It aims to allow people with different dietary requirements to still feel a sense of inclusion and not be reminded that they are different from their peers on the basis of their condition/s. These can be easily obtained from many stores (supermarkets, stationary shops, card shops etc.). Some suggestions I personally have for non-food items are:

-glow sticks/bracelets/necklaces
-balloons
-bubbles
-stickers
-temporary tattoos
-toy soliders
-colouring pencils
-pencils
-pens
-crayons
-marker pens
-erasers
-pencil toppers
-slinky's
-coins
-finger puppets
-notebooks
-bouncy balls
-whistles
-mini colouring books
-Halloween themed rings
-Halloween themed hard animals
-vampire fangs
-playing cards
-bookmarks
-stencils
-beaded necklaces/bracelets
-squishes
-fidget toys i.e. tangle, fidget cube etc.
-hard vehicles
-yo-yos

Wednesday, 24 October 2018

You Know You Have a Chronic Illness When...

So many scenarios arise where I think “You know you have a chronic illness when this happens”. I decided to compile a list of some of the most common situations I associate with being chronically ill that I feel other people may relate to.
You know you have a chronic illness when…
  • your medical equipment/supplies are decorated for the holidays
  • you’re on a first name basis with many of the medical staff, including: paramedics, nurses, doctors, receptionists in the hospital, cafeteria workers, people who work in the gift shops, pharmacy workers etc.
  • when you go to A&E/the ER you no longer need to say your name at reception anymore, as soon as you walk up they recognise you and clock you in
  • you have a “just in case” bag pack, just in case you spontaneously land up in the hospital
  • when you find empty tablet strips/bottles EVERYWHERE
  • whenever someone sees an ambulance going in the direction of your home they question whether it’s for you
  • you are on so much medication that you’ve questioned starting your own pharmacy
  • you cannot travel light because you have to carry so much with you
  • you’ve peed in a cup so many times that you could do it with the lights off/your eyes shut and not spill a single drop
  • your pharmacy doesn’t need to ask for your: name, date of birth and address anymore, they instead ask how you’re getting on
  • you can pronounce and spell very complicated medical terms/medication names that even some of the medical staff struggle with
  • you can give medical staff advice on the best places to get blood from you/insert an IV line
  • someone contacts you they ask if you’ve been in hospital recently
  • you watch medical dramas and you can tell if the medical terms are being used incorrectly or the procedures performed wrongly
  • you know the price of things such as: x-ray’s, MRI scans, CT scans, blood tests, a bag of fluid etc.
  • you leave your house you always ensure you’ve got your emergency medication/medical kit with you alongside everything else
  • you have to pass up the chance of having really cute, small handbags because you know they just won’t be big enough to keep all your medical supplies in
  • you have to arrange your bedroom with the consideration that paramedics may require entry into it at some point
  • you try to keep your house constantly in the way you’d like to present it to people in case medical staff have to spontaneously come over
  • paramedics are called out to you and you’ve not had an ambulance callout in a while and they say to you “Oh we’ve not seen you in a while!”
  • you name all of your medical equipment/supplies
  • you always consider in the back of your mind, when you go out, where the nearest hospital is, how you’ll get to the hospital if need be and who will help you get there