Recently I experience the best of times and worst of times. It was a Saturday and I broke my ParkRun PB (24:46 at Rickmansworth). I also broke a few of my rules for staying alive and faced some pretty starling side effects.
I wasn’t going to share this blog because I prefer to share positive things and messages. And also because quite frankly I’m embarrassed.
But I found it really helpful just to write it down, get my thoughts straight and work out how to avoid it happening again. Then I decided I will share this story because if I can learn from this then you can all perhaps find something of use here and we can all move on. Whether this is of use to you, your family, child or friend, it’s onwards and upwards in 2018.
I am also looking forward to many more Saturday’s in the Cafe in the Park… where this took place and since writing all this down I did actually return, just for a coffee mind you, but it was fine. Absolutely fine. I will go back and talk to the owner and find out if it is safe when it’s quieter but for the time being it’s coffee all the way for me.
Beautiful place for an anxiety attack
So let’s begin. This recent experience resulted in a pretty significant anxiety meltdown which continued for an hours walk around the lakes after breakfast and well into the afternoon.
I was quite upset about it for a while and have had another panic attack since, totally unrelated to food and most perplexing, but I am not giving in to this.
I am not this pathetic crying mess. I am brave and strong and I can do this.
Before you panic, there was no allergic reaction.
I am quite safe… it was just this new fear I am experiencing. Sheer panic and I can’t control it, despite all rational thoughts that I can walk out, not eat anything, stay safe…
It all happened because even though breakfast in ‘Cafe in the Park’ was in my calendar I hadn’t had time to speak to them about what I could safely eat. That is totally my fault, and due to the severity of my allergy I would NEVER EVER turn up during any establishment’s busiest time and demand a safe meal with no prior knowledge about whether this would be possible. I would always phone or email and ensure that I have spoken to staff, preferably the owner or chef, before booking anything anywhere. And if I’m unsure, stick to a very safe option ie. ham, egg and chips or steak and salad or bacon and eggs. Simple stuff. This strategy has served me well.
So on this occasion, being unorganised and just a bit nervous about ordering breakfast in a cafe I brought with me a Tesco Gluten Free and Dairy Free Egg Roll. I figured if everyone else (there were about 8 of us altogether) was eating breakfast and I joined them for a coffee (with no milk) that would be OK. I almost just had a coffee and kept my safe food hidden away.
Before I go on I will just explain, that the last time I ordered breakfast and explained all my allergies was in Palm Springs in September. Unfortunately they omitted to tell me that the gluten free muffin also contained dairy, despite me asking on numerous occasions. The result was the most terrifying experience of my life. Unconscious and rushed to A&E and forever grateful to the friends and experts who looked after me.
So perhaps it’s not a surprise that my trust was lacking and my nerves were raw.
I just wasn’t feeling particularly brave that morning but no one knew how scared I was because I hadn’t told any of my new running friends. I was just really pleased to be invited to breakfast.
Call it bad luck? But when I thought it was quiet enough I tried to sneak out my safe roll to eat.
Unfortunately the owner of the cafe happened to be sitting right next to me and politely explained that I couldn’t eat my own food.
Of all the luck! I was very embarrassed and put the roll away. I completely understand how annoying it just be if customers bring in their own picnic rather than order food.
But I did try to explain to her why I’d done it.
I wasn’t trying to get away without paying.
I would pay double for the privilege to walk into a place and just choose from a menu. Just like that.
I wasn’t being sneaky.
I was just badly organised, very frightened and trying to do my best to stay safe.
I had not planned ahead and was suddenly crippled with the most terrible fear.
I thought it would OK as everyone else was tucking into the most amazing looking breakfasts.
The owner assured me that they could cater for allergies and had lots that I could choose from.
But she went on, and on and for quite some time gave me a little bit of a hard time. I kept saying ‘sorry, I’m not going to eat this,I’m Sorry.’ I gave up trying to explain but she was full of praise for her amazing menu.
I ended up getting very upset and feeling so pressured that whilst I wanted to run away and get out of there, I felt so humiliated with the owner still pressing that they could really feed anyone with any allergy… have our gluten free sour dough she said… again and again, while I sat their crying.
Instead of staying calm, thanking her and promising to do my research for next time, I went up to order breakfast in a busy cafe, shaking with fear and with tears pouring down my face.
Why did I do that? Why didn’t I just compose myself and maybe just ask for another coffee?
Stick to the rules. Stay safe.
Because breakfast and a muffin with undeclared milk was how it all happened before. Never eat bread when you’re out unless you’re read the ingredients. My new rule! Never trust ANYONE.
And the memory, even though I have very poor recall of the whole event, just came flooding back.
So when the server went to check the gluten free sour dough, assuring me that she ‘thought it would be OK’… I totally lost it. Because ‘thinking’ something is OK is not good enough.
I refused the probably safe gluten free sour dough because my life is not worth taking that risk.
I didn’t enjoy my plate of poached eggs and bacon but I can assure you they were very well cooked.
The reason I didn’t enjoy them was because the fear, humiliation and complete embarrassment that I couldn’t control my emotions and the awful knowledge that all my new running friends were watching this silent melt down… kind of ruined it for me.
After we’d finished I could feel myself getting upset again when one of the lovely ladies asked me if I was OK… so I let all my friends leave so that I could get take-out coffee and walk it off around the beautiful lakes.
I am so angry with my emotions because I couldn’t even order a black coffee to take-away without crying. The owner came over to speak to me again and I think then, for the first time perhaps realised just how terrified I was. But I was too far gone by then to hear that they have a full allergen menu so would be able to tell me the exact ingredients in the sour dough. It’s a shame staff hadn’t just offered to show me the allergen menu or that she hadn’t checked for me but hey ho. We live and learn.
Maybe next time I will be able to try breakfast there again and enjoy it. But only after I have checked, read and reread the ingredients in that home made gluten free sour dough.
Cafe in the Park at Rickmansworth Aquadrome have very clearly marked menus and it is definitely a great place to eat out if you have allergies. They have gluten free bread available if you ask and the menu is marked up with the key main allergens.
If I can ever bear to show my face in there again
Thank you to my ParkRun buddies. Thank you for not making a big thing about it while I lost the plot. Thank you Matt for helping me get the PB and for not even noticing the meltdown and assuring me that most of the others didn’t either. Thank you for never referring to it ever again…
Yours, struggling, embarrassed but not giving in…
I’m still here, annoying my Mum, blogging and running. Let’s run this fear out of my system.
So why, why when asked how was breakfast at Cafe in the Park by Mum do I lie and say, ‘It was fine’. Why?
Because I was ashamed to admit the truth even to my own mother. Because we are a family who just get on with it. We don’t complain.
Please talk about this to people close to you if you are feeling similar fear. It is not easier to cope with in silence. It is in fact much easier to deal with when you share your feelings.
And you know, I don’t care what anyone thinks. This is not anything to be ashamed about. It has never happened to me before but I have friends who have anxiety and I haven’t truly appreciated how debilitating and terrifying it is.
Being prepared, never putting yourself in that kind of high pressure situation and staying calm sound like easy measures to take but sometimes life jumps up and bites you.
Hope to see you guys soon Cafe in the Park. This is not a bad review in any way. It’s a lovely, lovely cafe but if you plan to eat there with allergies, please phone speak to them prior to going and ask to see the allergen menu. Because this place can be busy, heaving in fact which isn’t great if you need to relay a complicated but important allergy message.
Has anyone else experienced this kind of reaction? What did you do?
Please tell me I’m not going crazy… LOL
First things first, GladSkin sent me a free sample of their Eczema Cream to review and since I’ve got particularly dry, sensitive, eczematous skin it’s a tough test for any cream or moisturiser.
This is how it works (from their website)
GladSkin Eczema Cream
Billions of bacteria live on our skin. We now know good bacteria are essential for the protection of our skin and vital in maintaining a healthy skin condition. But there are also bacteria, like S. aureus, that can cause inflammation and symptoms such as itch, redness and rashes and trigger flare-ups.
Gladskin Eczema is the world’s only product that targets just the harmful S. aureus bacteria. Unlike conventional products, Gladskin leaves the good bacteria – essential for healthy skin – intact. It is a harmless but real active solution, suitable for long-term daily use.
Why is Staphylococcus aureus such a problem for eczema skin
Scientists have proven that people with atopic skin and eczema have far higher populations of Staph A than those with clear eczema free skin. Add this to the lack of Filaggrin, the filament in skin which binds healthy skin strongly together and you have a bad combination. The poor Filaggrin in eczema skin allows any bacteria to get right into the cracks in dry skin, as detailed above, causing redness, itching and infection.
Firstly this is totally safe and not a steroid so already gets my thumbs up.
I did notice that my skin improved using this cream. It is cooling to apply, smooth and didn’t irritate my skin. It also went a very long way for a small 50ml sample.
I do have very dry skin though so I used GladSkin is a base layer and applied emollient on top when my skin felt particularly dry and tight. I wonder if the gel may be better for particularly dry skin.
What I like most about GladSkin is that it’s actively addressing a problem with eczema skin, ie. the bacteria. So many products sold for eczema are just sticky, gloopy stuff, especially the prescribed tubs of lard that I use, because I can’t afford not to. There is nothing healing or beneficial to skin in any of the emollients I use that I get on prescription. All they do is smother the skin, and they do help moisturise but they are not pleasant to use.
GladSkin is also in a pump dispenser so is more hygienic than dipping fingers into a pot.
The only thing I found uncomfortable was the feel of it on the palms of my hands. I always want to wash the layer off from my palms, which are not affected by eczema anyway. Everywhere else it felt lovely on my skin, so I guess maybe it’s just me being weird.
You apply this cream to clean skin twice a day and it really did seem to reduce itching and redness for me. Time will tell, I need to use it for a bit longer to see if it really works but I’m very confident.
So thank you GladSkin. I enjoyed trying this eczema cream and would definitely buy it again, though I will probably try the gel and need a larger pot!
Has anyone else tried this? How did you find it on your eczema? Would you recommend it?
If you’ve been using topical steroids for your eczema for many years and are worried about overuse, please read this. When you get a flare up of eczema do you find that nothing helps except more steroids?
Prurigo eczema on my hand a wrist. Shows how dry my skin is
Have your steroids stopped working and you get prescribed stronger and stronger creams and emollients? If the answer is yes, you may have a topical steroid addiction. And let me tell you now, coming off Topical Steroids is like something from hell.
Just google Topical Steroid Withdrawal or TSW and be prepared for the stuff of nightmares.
I have considered cutting out steroids and going through withdrawal myself but honestly? I’m not strong enough. I would not be able to work, I just know how hard it would be.
I was recently contacted by the ITSAN Red Skin Sydrome Support Group to ask me to complete this questionnaire to help them ascertain the size of the topical steroid overuse problem.
This is what they said, “Hi Ruth, I’m currently serving as the Executive Director of ITSAN and we are running a campaign to encourage members of our group to report their adverse effects from Topical Steroids to the FDA. It’s super easy and only takes a few minutes. If we get enough people to report, this will be a GAME CHANGER in the re-evaluation of Topical Steroids, future research, changes to drug labeling, educating Dr’s about TSW, prevention, and proper treatment for those suffering. Will you take a few minutes and fill it out? The link below will take you directly to the FDA’s reporting site. *You don’t need to live in the US to fie a report. Also, if you aren’t sure about the answer to every question, that’s okay. You can just fill in what you know. Thank you for your consideration!! And let me know if you do fill it out! “
Who should complete the ITSAN survey?
Do feel you are addicted to steroids which are not really helping heal your skin? Are you too scared to stop using them and go through withdrawal? Are you worried about the amount of topical steroids you use? Have you heard of ITSAN, researched TSW and don’t know what to do? Does your doctor or dermatologist just tell you not to worry and to keep using steroids?
If this applies to you, why not complete this short survey. You have nothing to lose and it might help the industry stop over prescribing and help us find other ways of healing our skin conditions.
There are other options to consider that do not involve Topical Steroid withdrawal, one of which is Dupixent so I shall be looking into that. However this also concerns me as it could just be fanning the flames with more drugs. I am terrified that I will have to go through TSW and through no fault of my own. I’ve followed medical advice and found steroids the only thing to relieve eczema and now I am faced with a truly horrendous journey of years of withdrawal. Personally I’m not going to even attempt it. If you think you would like to consider cutting out steroids please do not do so without consulting your Doctor and/or Dermatologist. You will need medical support and advice. This is serious stuff. Please also contact ITSAN as they have a support network out there who can help you.
Please share your stories of going through TSW, do you think your addicted? Did you manage to cut out and stop using your steroids? How long did it take?
I look forward to hearing from you all… and maybe this survey will help prevent over prescribing of steroids by the NHS in the future and research into safer medication and understanding of eczema.
Food Matters Live is the UK’s first cross-sector event which brings together the food and drink industry, retailers, foodservice providers, government and those working in nutrition, to enable collaboration and innovation to support a sustainable food landscape for the future.
My advice is to plan ahead. Study the programme and work out which events you want to attend. Certain events, like the Allergy UK Catering session required pre-booking so do this early to avoid missing out. Others get full up quickly to make sure you get to the room on time.
Free Seminars – There are so many subjects, streams and speakers to choose from that it’s actually hard to decide and there were many clashes that meant I couldn’t attend everything I had ear marked but I did cram in a lot of learning. As well as a whole afternoon crammed with speakers in the FreeFrom seminar series you could learn about so many things from The Future of Food to Tackling Obesity to name just a few.
Allergy UK ran a seminar – Catering for those affected by Food Allergy – I was lucky to be able to attend this and it was so useful for me, not to mention timely after my recent experience in America. Find out more here.
Skinny gluten free beer
New Products – It was exciting to discover a new Dairy Free Chocolate from Push. It is dairy, soya and nut free and also very low in sugar. I was lucky enough to try to some it was really delicious, not too sweet and great cocoa flavour. It’s not on the market yet but look out for news in 2018. Remember, you hear about it here first!
The FreeFrom Eating Out Awards were hosted in the main glass theatre room to a packed audience. This was the highlight of the show for me and main reason for me attending. As a judge for the awards I’m so passionate about finding safe places to eat where I feel included and not like I’m awkward or not welcome. To see the Winners of the FreeFrom Eating out Awards visit their website here. More blogs soon on the amazing restaurants I was privileged to be able to judge.
New Skinny gluten free beer – A chance meeting on the train home on the last day meant I had a bottle of this to sample and it’s delicious. It’s not as sweet at a lot of gluten free beers and was really refreshing. I would definitely drink this again, and the creative in my just loves the brand and labelling. So clean, fresh and modern. Find out more about Skinny Brands lager here.
Low FODMAP diets – Dr Megan Rossi presented a really informative talk about this very complicated area of food and diet.
Most importantly, take a packed lunch (Courtesy of Warburtons GF, Violife, Lazy Days and Nairns)
Histamine Intolerance – If you want to know about this check out Dr Janice Joneja who has written two books, one for the layman and another for professionals. This was such an interesting session as I hadn’t really grasped quite what histamine intolerance was or how it could be controlled. Read, The Beginners Guide to Histamine Intolerance here.
Fecal Microbiota Transplant – don’t be squeamish, this isn’t a disgusting as it sounds and could really change the lives of many people with allergies. Visit the Taymount Clinic website to find out how introducing missing, healthy, clean and tested bacteria could help many immune conditions to improve.
Don’t go there expecting to find loads of FreeFrom foods. There were some of great brands there but many were not offering samples and none of them were selling their products. The lovely ladies from Angels and Cookies were there showcasing their delicious and totally freefrom cookie dough. Yes of course I had to try some of that! I did get to try some amazing Sprouted Rye Bread which was so moist and tasty, as well as Freedom Vegan Mallows. And Don’t forget the chocolate and beer – see above!
If you’re interested in food, science, the future and more, you should consider attending this next year. It’s completely free and well worth the horrible train journey out to the Excel Conference Centre.
If you are very allergic to dust, cleaning the house is probably NOT your favourite job and you wouldn’t be alone. No one likes vacuuming… ha ha. So imagine how excited I was recently when I was given a Dyson V8 to try out. This is a sponsored post, I did not pay for the Dyson vacuum – Thank you Dyson! I really love it. It’s fantastic for anyone with a dust allergy because it’s so cleverly designed…
This is a very long overdue blog about my amazing new Dyson. I’ll bet they’re regretting giving me one to test because I’ve had it months, after which I travelled around for ages while I house sat at rather lovely houses with cleaners and already plumbed in Dyson hoovers so I had no need to get mine dirty.
Finally this beautiful Dyson V8 emerged from its box for some proper testing a few months ago.
I’ve given it a thorough test and I LOVE it!
Pro’s and Con’s of the new Dyson V8 for your dust allergy
The Pro’s of this fantastic vacuum
It is so easy to empty – This is by the far the best bit about the Dyson V8. I mean I love everything about it. It’s space age look, it’s streamlined curves, but it’s eject button is just the best! No puffs of dust, just a very swift jettison of all that horrid dust… Having used a Dyson before (my Mum has the Dyson Animal) I wasn’t so impressed with the way you tip out the dust, in a huge puff! But you do get used to that, and can empty it at arms length and keep your head away. But the new design of the V8 is very much improved. All you do is press the red button and it very neatly sort of shovels the dust out in one lump. No puff of dust, and it does empty much more reliably, as long as you don’t over fill. With the animal you often needed to fish about up the sides to remove huge chunks of dust that was lodged in hard to reach places. Again, overfilling prevents some of this. All Dyson vacuums should be emptied regularly when they reach the level. Never over fill! Something we all did in the days of horrible hoover bags.
Also, when you do empty it, do this twice. Close the clear bin, then eject dust again for a second time, just to get rid of all particles and do this carefully over a bin or bag or outside in the compost bin.
Dyson V8 cord-free vacuums - Emptying the clear bin (UK) - YouTube
You can see all the dust – For someone with quite a severe dust allergy I’m surprisingly pleased to see it all filling up inside the Dyson cylinder. You would think the sight of all that dust would offend me, but it just amazes me how much you get from a small house, and I know I’m removing these bits of dust from my home so it pleases me
So smooth to use – It’s light, easy to manoeuvre
Simple to dismantle and use – It really is easy to use, dismantle, attach any of the many handy tools for cleaning the car, stairs, corners etc. It’s push and click, so simple you don’t even need any instructions.
Looks pretty nifty! – With Dyson behind the design it’s bound to be stylish but it really does look cool. It’s a vacuum anyone would be proud to own. It’s colourful, sleek, stylish and fun and easy to use. Yes cleaning your house has never been so fun!
Well designed – Not only does this vacuum cleaner look good, it’s also very clever. Both assembly, emptying and dismantling are so cleanly designed. It fits easily into a small storage space, is light and easy to move around the house, light enough for your kids to carry upstairs so they can clean their own rooms. What’s not to like?
Long battery life – I’ve been testing the V8 now for a months and months (sorry for the long time for testing Dyson, but every time I thought I’d got this blog finished I thought of a new cool thing to add. The battery life is one of the best things. It lasts for at least 45 mins so is plenty long enough to clean your house or car. That obviously depends how dirty your house is. I’ve been taking this hoover around with my in my car to clean other people’s houses and if there is a lot of dust you may need to charge it to finish the job, but once your Dyson has broken the back of the job, it’s never as dusty again. Hoover regularly and you’ll notice less dust is collected and you can clean the house quicker.
Great capacity to hold dust – The v8 does have a larger cylinder which will hold more dust but I would caution against overfilling. I find it works best if you empty it regularly, when it’s between half and two thirds full for optimum operation.
New found love of vacuuming – This may sound crazy but I actually don’t mind hoovering any more. I actually enjoy it. It really is so quick and easy and if you empty it carefully, dust reaction free.
The Con’s of using my new Dyson vacuum
Recharging is tricky – Once you’ve got it set up it’s a doddle but I really struggled to get my charging bit working. You have to feed the cord through some hole or other and it’s really rather fiddly. Don’t ask for advice getting yours sorted, I’ve done it once and hopefully don’t need to ever do it again. I’m ashamed to admit that I actually needed help from my Mum to get the charger sorted… You can fit the docking station to the wall, which I plan to do when I get sorted. At the moment it has to kind of lie on the floor while it charges but this does work fine.
Needs looking after – This could be seen as a negative but I’ve got used to the extra attention and maintenance that the Dyson cleaners need. Basically, it’s not like your old hoover that you could just fit the bag and fill it to bursting and empty it when suction began to reduce. With the Dyson vacuums you do need to remember to check the filters, empty regularly, not hoover up large objects so check the area and sweep up large items, and clean those filters with the brushes provided. If you do this you’ll have no problems.
Cleaning the filters – This is an essential if boring chore that must be done regularly if you own a Dyson. It’s actually pretty easy to do, just run them under the tap or use the special brushes supplied for the purpose. However remembering to clean them isn’t so easy if you have a scatter brain like mine! It’s worth doing this regularly as the vacuum can go wrong if you don’t. The filters should last quite a long time if you clean them regularly and can be replaced easily through Dyson.
Cost – These vacuum cleaners do not come cheap at around £400.00 but I would say it is well worth it. (I would like to add at this point, I am reviewing this for Dyson and have not paid. This is a sponsored post.) Especially if you want your dust allergic kids to be safe using it too. There are also other smaller and cheaper models, like the Animal; I know several people who are thoroughly pleased with theirs. The Dyson v8 is just sleeker, more powerful, better designed, holds more dust and holds charge for much longer. The decision of which one to get is up to you! You’ll never want to use your old vacuum again. Click here for prices: Dyson V8 Absolute Cordless Vacuum
I’ve just read the recent article in the Daily Mail about Raymond’s Blanc’s issues with food allergic and intolerant diners.
Salted Beef salad with cabbage, gherkins and cournichons from Brasserie Blanc
I have always loved Raymond, not least because his rather more affordable Braserie Blanc restaurant has an allergen menu which I can order from safely. You can read about Brasserie Blanc with allergies here.
We are a kitchen, not a hospital – I am well aware of that. Thanks for pointing it out though
From a gluten intolerance to a garlic or tomato allergy, more and more people are making a fuss about what they can and cannot eat – Well there’s sympathy for you. More and more people have food allergies and intolerances, the world is changing. Either you cater for us or you don’t. You are quite at liberty to tell us allergic diners that there is nothing suitable. We shall go elsewhere. Well I will anyway. And I NEVER make a fuss. I try to order the easiest, simplest dish possible to make as little fuss as possible. And what would you do if all those 50 diners a night started to go elsewhere because they didn’t feel welcome? I do get how frustrating it must be for a chef when you take extra care to make a dish dairy free only to have that guest order a dairy containing dessert. I get that. But surely not all guests are like that? It is a growing trend whether you like it or not but this doesn’t really help with educating people about the language we should be using to explain allergies and intolerances.
The ‘fashionable’ obsession with having a food intolerance – I would give anything not to be like this. Anything in the world. I wouldn’t call it fashionable nor an obsession, more a curse. But thanks for the sympathy. I think you actually mean people who don’t have a food intolerance, because it can cause very real and painful symptoms for people who DO. Not everyone asking for freefrom meals is making it up or ‘choosing’ to avoid certain foods.
50 customers claim to have issues every night – I don’t ‘claim to have issues’ Raymond, I DO have issues. I take great issue with the confusing language in this article and the attitude that seems to lump allergies, intolerances and lifestyle choices into the same category of ‘diners with issues’ because we are NOT the same.
We take each of them seriously – Thank you. I am glad to hear that. For a minute I was beginning to feel most unwelcome. What I can assure you is that most of us with very serious allergies don’t eat out often and when we do we choose something very simple like steak and chips. I would never expect any chef to go out of their way to create a culinary delight for me. I just want to be with my friends and order a safe meal. Sadly this is the only positive and encouraging statement in the whole article.
If you don’t have an allergy, you’re nobody – I’m kind of speechless about this statement. Do you really think we’re enjoying this? Your comments may be aimed at people who choose to go vegan or eat gluten free as a lifestyle choice but some of us don’t have a choice. Some of us would LOVE to be nobody.
I dream about being nobody.
But don’t worry Raymond, I can’t afford to eat at ‘Belmond Le Manoir aux Quat’Saisons’ so I’ll leave you to cater for all those annoying fashionable somebodies with their obsessions with food intolerance and allergies. I wouldn’t want to tip the scales to 51 fussy diners!
Food intolerance, whilst less serious and not life threatening can be unpleasant and very painful to live with.
I am saddened to hear a very popular celebrity chef use their public privilege to contribute to an article like this.
I will finish by saying that I am well aware that the Daily FMail online is not known for being accurate and often goes for that sensational headline, taking any comments out of context. It would not come as a surprise to hear that some of the views expressed here were not Raymond’s own.
When Raymond uses the words allergy and intolerance in the same sentence I’m pretty sure he is very well aware of the differences but articles like this only serve to make life for those of us with real allergies; severe, life threatening conditions feel misunderstood, alienated and actually, pretty scared of eating out.
It’s no wonder people don’t understand the difference. It is heartening to see that they do actually explain the difference at the end of the article but reading this left me feeling very angry.
And I am aware that I’m jumping to conclusions about Raymond Blanc’s opinions so Raymond, if you’re reading this, do feel free to clarify any of the above.
First of all, you are not alone. The first thing you need to do, if you have a diagnosis for a serious life threatening allergy is to arm yourself with all the information you can. Get the best help, get tests done, see a specialist. Easier said than done I know, but don’t give up, if you are not happy with the advice you’ve been given keep on searching.
Find out exactly what you need to know to stay safe. Understand it’s OK to feel like this. It’s alright to feel fear, anxiety and anger. Helplessness, hopelessness and a total lost of control. But you get one chance at this life. Don’t let the fear consume you. Right now I’m not the best advert for that myself but I’m working my through the emotional assault. Don’t suffer in silence.
Here are my tips, the things that have helped me.
Speak to people – Tell your friends and family. Do you know anyone with a similar medical condition? I have found recent allergy focused events, including The Anaphylaxis Campaign Conference and Food Matters Live encouraged me to share and talk to my fellow bloggers, parents of allergic kids and people in the allergy community. It was tough at times and I didn’t hold it together as much as I’d hoped but I came away from both events knowing that it had helps, I was making progress just by sharing.
Contact professional organisations – I have also spoken to Allergy UK and The Anaphylaxis Campaign who both have free helplines which you can phone and also loads of advice and resources. They also have local support groups so you may find one local to you which will help you to attend. The Anaphylaxis Campaign also offer one free referral to a counsellor but do be aware, she is busy. I wasn’t able to get an appointment until 2018 but it’s worth considering as it could help you.
Writing about it – this might not work for everyone, but as a writer and blogger, writing about my recent experience, how it makes me feel and how I plan to use these emotions positively is really helping me. I appreciate that it might not work for others but don’t knock it till you’ve tried it. So basically guys, you are my therapy. Whether you like it or not, this blog will be following my journey dealing with this. It’s already helping. And it’s already tough. Bottling it up, my earlier preferred coping mechanism wasn’t working and ultimately you have to deal with emotions and move forward.
Update your Action Plan – One thing I realised after my recent allergic reaction was that my Allergy Action Plan needs updating. It has literally disintegrated with overuse. Having a strict plan and protocol in place can really help you and those who may need to care for you if you have a reaction know what to do. If you don’t have one, write one!
Anger management – Feeling angry isn’t an emotion I’m used to dealing with. I’m far less tolerant and quick to rise, where before I rarely felt anger. It’s almost like a rage building in me and I have grown very intolerant of people. Apologies if you’ve been on the other end of my anger. I don’t like feeling like this and I am working on taming it. This book, if you can ignore the Christian references is very helpful. It is written by a Christian but deal with anger in a very sensible way. It’s a natural emotion and actually quite healthy. Don’t beat yourself up (as well as snapping at others… lol) Try reading ‘Taming a Powerful Emotion’ by Gary Chapman
Cognitive behavioural therapy (CBT)– If you think counselling might help you to deal with fear and anxiety then CBT is probably the most useful kind of treatment available. There are loads of organisations who can help, from the NHS, Mind and private counsellors. Research what’s available and find a solution that works for you.
Health Minds referral scheme – you can self refer yourself for counselling using the NHS Healthy Minds Self Referral scheme. I have already had the initial assessment and have my first session scheduled for next week. I already feel calmer after just having organised this. The first assessment was gruelling enough and I know this will be tough, but I really think it will help me to talk about how I feel with a neutral person, someone who does not know me and is qualified to help me work through this and find ways of coping with how I’m feeling. This is the most convenient solution for me at the moment because they arrange a phone call with you on a weekly basis at a time convenient to you, which is easier to fit into my life at the moment.
I am, I am, I am by Maggie O’Farrell
I am, I am, I am by Maggie O’Farrell – this book is beautifully written and covers Maggie’s memoirs; seventeen brushes with death. This may sound macabre and something you definitely shouldn’t be reading when faced with your own near death experiences, but I challenge you. You will finish reading this feeling newly conscious, and determined to make every heart beat count. The final chapter recounts an experience when Maggie’s own daughter has an anaphylactic attack and has to be rushed to hospital. Read this book, if you have allergies or are a mother of allergic kids – I am, I am, I am, by Maggie O’Farrell – it will help you.
Run, Run, Run – Again this might not be for everyone but the sentiment is the same. Find something that you can do that completely takes you out of how you’re feeling. Something that clears your mind. This is running for me. I’m running my brain back to normal. Well maybe not normal, but back to stable. This could be something creative, fundraising, volunteer for a local charity. Anything that gives you new perspective. The latter being something I may look into when I can find more time. Giving something back can really help you feel your worth in society, because you are worth so much.
Wear your Medicalert bracelet – This is really important. In my recent allergic reaction I was unconscious and couldn’t tell anyone what had happened. I had been wearing my Medicalert bracelet but when the reaction took place, that morning I had slipped it into my purse because it was irritating the eczema on my wrist. No one knew this and I was told that the paramedics were searching or one. It has made my realise I need to have more than one option of how to wear mine. I have a necklace too but need to find something softer for when my skin is sensitive. Writing this I realise I have not resolved this one yet!
I hope this helps. It’s not an exhaustive list and I may add to it as I think of other things. But as you can see, there are so many practical steps you take to help you cope.
One thing I am doing a lot of is sleeping. Emotions are exhausting. Be kind to yourself. Let your mind and body heal. Stay safe allergy warriors. Be prepared, never take risks and always, always carry your adrenaline injectors #takethekit
I will leave you with this video. If you know someone with anaphylaxis who does not carry their adrenaline, or even worse, has not been prescribed any, ask them to watch this short but very moving video
nb>If you feel really depressed or have any thoughts that make you really scared, don’t know what to do and just need to speak to someone any time of day, call the Samaritans 116 123 from any phone any time of day or night. Someone will speak to you and just the act of talking could help.
For years I’ve been trying to eat less processed food and bread is one of the harder things to crack. I discovered EverFresh Sprouted Rye bread at Food Matters Live last week. (Thank you EverFresh for the free loaf to try)
EverFresh Sprouted Rye Bread
THE best thing about this bread is that it’s only got one ingredient. Sprouted Rye.
So no horrible preservatives and mould inhibitors.
Just 100% sprouted rye!
It is Dairy Free, Wheat free, Organic, Vegan, Vegetarian, Yeast Free, Salt Free, No added sugar.
For all of you with a wheat allergy this is great and definitely one to try.
It’s not like normal bread and certainly not like other rye breads I’ve tried. It’s so moist and more like cake than bread but I loved it.
It was great toasted, though did take a few goes in the toaster on account of its moistness.
It was also lovely with some Violife vegan, dairy free cheese.
Try it on its own, just rye bread. Delicious.
But it’s not fantastic as a sandwich. I did manage to create but on account of how moist the bread is, it was a challenge to eat and wanted to fall apart. It would have fallen apart if I’d let it.
But what is wasn’t was dry. It was just so moist and such a surprise. I loved it and will definitely be trying this again
I could probably write a whole book about this and maybe I will, but for now this is more about a kind of therapy for me. In September I ate out in a cafe in America and had the worst allergic reaction of my life.
Anaphylaxis, Anger and Fear
I often joke about it when anyone asks me, “When was the last time you had a reaction?”
I’ll say something like, “A few years ago, I’m due another one!” and try to laugh it off.
Because that’s how I cope with it.
I have to live with it so I kind of ignore it. I never stop being vigilant but I always think that nothing bad will actually happen to me.
Well this time it did.
My previous reactions have been terrifying.
They’ve been painful.
I’ve felt scared and fought for my breath and wondered if this is the time. If this is the reaction that will get me.
But I’ve never had a reaction which came so suddenly and out of the blue.
One that left me with literally only minutes to react.
An attack which floored me completely.
Left me unconscious and meant my friends, who I owe so much to, had to take over and get me the help I needed.
I am so very very grateful that they were able to get to me and phone for help.
I did try phone, but after administering two adenaline injectors, I knew I was passing out.
I knew I had moments left. Nothing was helping. Inhalers, antihistmines… nothing made any different.
The last conscious thing I did was send a whatsapp message to my friends. We had a chat group to help us meet up while we were away. And I wrote these few words.
“Help me. I’m having an allergic reaction…”
As I sent this message I had the sense to prop my door open and I don’t remember much after that. I had managed to crawl to the bed, to the hotel room phone, but I was phoning the wrong number. The UK emergency number.
Nothing prepares you for the crippling fear of knowing you might be dying.
And that, my friends, is as far as I’ll go on this subject for now.
Because I can’t talk about this yet to anyone with out breaking down in tears. Writing about it is strangely calming. I can delete, rewrite, think and understand how I’m feeling. Faced with another human and I just get so emotional.
I’m slowly pulling together interviews with all the people involved so I can make sense of what happened and learn from it.
I have lots of upbeat, happy, helpful posts planned too which have nothing to do with allergic reactions, but for now you’ll have to join me in my therapy. I think writing about this is going to help me recover, come to terms with it and move on.
And if it helps anyone else who has had a similar reaction and feels fear, anger and rage like I am, you can work through this with me.
I’m hoping to find a therapist and some counselling, as well as reading about anger management. Talking and writing have always helped me, so this will be key to my future health and well-being. Don’t bottle it up. Please talk about it. Tell people how you are feeling. Don’t suffer in silence like I’ve been doing. You don’t have to do this alone.
Special thanks to Hazel and Rebecca who both helped me to realise I need to get some help this week. Angels.
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