This month is mental health awareness month and it was also Anaphylaxis Awareness Week (6th to the 12th of May) as the Anaphylaxis Campaign celebrates 25 years this year since it was founded.
It’s also Asthma and Allergy Awareness in America
I have loads to share on the psychological effect of living with a life threatening allergy and the fear of anaphylaxis so I wanted to talk today about what it’s like living with this condition.
Add to that chronic eczema, something that I and many other people with allergies also have and you have a whole raft of conflicting and limiting life affecting conditions. Before you’ve even woken up to face the daily challenges of juggling keeping a home and work life balance, these other conditions add a heavy burden.
The psychological effect of all of the above is pretty much overlooked in the general care and support of these conditions.
We get a diagnosis and then we go away and work out how on earth to live with the daily worry, stress, fear and anxiety that brings.
There really isn’t much support and I’ve found out the hard way that to get help you have to be in a pretty desperate place to be eligible. That shouldn’t be the case. It should not be a surprise that so many of us struggle to cope and often feel alone, confused and lost.
But we soldier on. We put on a brave face. We get on with life. We smile. The person you see at events, work, social gatherings etc. is hiding hours of preparation, stress, anxiety and in my case, regular practise to help me be calm, realistic and level headed on a daily basis. I’ve grown to love my daily mindfulness, meditation and self care but it’s taken me over six months to feel like even a beginner. This was something that I researched and developed myself with my counsellor as part of my self care routine, but was sadly never something recommended by the medical profession at any point before this. It has helped me so much with anxiety which in turn is helping me reduce the itch, scratch cycle, which is far worse when I’m anxious, worrying and stressed.
The fear of anaphylaxis can be overwhelming at times
The benefits mindfulness practise has given me has been incredible and covers all aspects of my life, but it’s not a quick fix. It’s something we need to work at, to learn, to explore and to develop. And my self care practise will not look like yours.
Mine involves meditation, walking and running, self care for my skin, reading and a newfound love and addiction to learning from podcasts. I can’t get enough of them. It all began with Fearn Cotton’s Happy Place and there are so many other podcasts out there.
Anything to expand my understanding of others and how they overcame incredible adversity in their lives is inspiring and really helpful.
It’s so easy to become self absorbed and hung up on what we are dealing with but everyone has their ‘thing’, their burdens and their life challenges. We all deal with these in different ways but we can all learn and grow from shared experiences and taking more time to care for ourselves as well as others.
I have met so many inspirational people through this allergy and eczema community. Often the face they portray on social media, instagram and to the world is positive and happy but as we’ve all grown together and got to know each other you realist that there is always more to every picture. Everyone has battles and more and more people struggle with mental health through trying to bottle these up, not seek help, not talking to others. Thankfully this is all changing and it is no longer shameful to admit you are struggling and to ask for help.
Let’s all make an effort to just listen. To just be there for those around us. No judgement. No advice, unless sought for, just give your time, undivided.
Try not to say things like, Oh yes, that’s when I…. or You should… What you think is right may not be helpful. All the person really wants at the point when they reach our for help or for your time is just for you to listen, ask if you can help, ask how it makes them feel or just give them hug and assure them it will be alright. Put away your phones and get off instagram and actually meet and talk to those you value and care for. Time is so precious so use it wisely.
I will be sharing more about I learnt from having CBT therapy last year for fear and anxiety in future blog posts but one of the key messages I came away with was that I have to learn to love myself and care for myself as I would others. I learnt that I had enormous sometimes crippling compassion for others but almost zero for myself. I was being a complete bitch to myself. That has all changed now. I’m still a work in progress but I am now slowly learning to love my weirdness, my own special brand of beauty and my compassion. Whilst I will always continue to do all I can to help others, through my blog here, through posting positive and helpful messages on social media, lobbying parliament and relentlessly raising awareness about all of the above, I may also go off grid from time because Ruth needs my time too.
She’s actually becoming quite needy actually. Wants another early night with a good book and who I am I to argue?
What is the most important thing that you’ve learnt in your life that combats mental health issues?
Considering that Natasha died in 2016 its disappointing that we are still talking about what laws need to change. These new regulations should have been in place from the start, but I am pleased that the FSA have taken a strong stance.
Restaurants will now need to label all ingredients and highlight allergens which help the allergy community immensely.
Will food establishments struggle with the new regulations?
The FSA fears this may be a struggle for some establishments, and I’m sure it will, but surely it would be far worse if more people with allergies were to die from allergic reactions. This is the ultimate failure. And in most cases the mistake WAS AVOIDABLE.
I still feel that any restaurant or food service outlet that is unsure should err on the side of caution and say they cannot guaranteed traces of allergens.
I have been turned away on lots of occasions. This can be embarrassing and inconvenient but I’m cool with that. I’d rather be told the truth. For whatever reason. If I’m not welcome somewhere I would much rather know!
I know others disagree with me on this, but having been admitted to A&E after repeated mistakes that stem from staff not understanding even what allergens are, how serious a reaction can be, thinking small amounts are ok… you name it. Despite my repeated checking, phoning and asking for assurances, mistakes still happen. I think this happens due to a lack of understanding, processes and training.
Don’t say something is OK if you are not 100% sure that it is!
There are plenty of cafes, restaurants etc. that do ‘get’ allergies and understand the processes needed. They are willing and happy to cater for allergic diners. Thank you to these places. You make a little ray of sunshine in what can be a very scary world for people with allergies.
What’s missing in these new regulations?
These new allergen labelling regulations are great but the part that’s missing is staff training. It’s all very well passing a law like this and it’s a great step forward, but the restaurant industry typically has a high turnover of staff, these staff get varying degrees of training and there are limited laws covering what allergen training they get.
Hygiene and safety training touches on the storage and handling of allergens but not all staff undergo this training, certainly waiting staff do not. They are the communication between the customer and the kitchen, which is where mistakes happen. What training to waiters and waitresses get?
For many English is not their first language so there is another communication element here. Do they even understand what you are asking them?
What do allergic diners want?
Tell us what’s in your food – We just want to be told what is in any sandwich or meal. That’s all.
We only want a safe meal – We don’t need the whole menu to be overhauled. It could mean that nothing on a menu is safe. Or it could mean that some simple process are put into place to ensure a few items are suitable for people with allergies.
There are more than 14 allergens – Remember also that some people are allergic to foods outside the 14 allergens that are required to be listed. These diners will be really pleased that all ingredients now need to be labelled. If you get anaphylaxis to pea for instance, it’s a minefield as this ingredient appears in many and some very unexpected foods.
Honesty – We want staff to be honest – it is OK to say they do not know what allergens are present. It is not OK to lie, or guess, or assume. If you are unsure, say so. If you do not have the ingredients, be honest about this.
Just say no – We would rather be told we cannot be served than be served a meal that makes us ill and means a terrifying trip to A&E. No one wants that!
Ask us questions – We want staff to ask us questions. I feel most safe when staff ask me things that show they are clarifying the situation. For instance, an intolerance to dairy can be treated differently to my severe allergy.
Be kind – And finally we want staff to show kindness. We are humans with feelings. Please don’t roll your eyes or sigh with frustration. For some of us it has taken a huge effort just to go out and try to order food.
I always tell staff I carry adrenaline and that my allergy is very serious. Despite this and always checking over and over again, I have still been served food that has made me ill.
Most recently being served a ‘dairy free meal’ which was anything but. I got ill very quickly, had to be taken to A&E and spend the night in intensive care. A truly terrifying experience which was completely avoidable had that waitress, chef, etc. understood. Clearly there was some kind of massive miscommunication or mistake in this case, but it wasn’t just a trace, it was the ingredient being included as milk, cream, cheese… you name it. I couldn’t have been given a more inappropriate meal if they’d tried!
The avoidance and handbag picnics
For myself, I tend to avoid eating out if I can. This means I opt to exclude myself so I can keep myself safe. Alternatively I will always have a backup option in my bags so that I won’t go hungry.
But I do have places that I trust, and with careful planning and checking, I can eat out!
Some responsibility must be taken by the allergic person
I must stress, I do not think that this all the responsibility of the food hospitality industry. I have a serious, life affecting condition and as such I need to behave sensibly and live my life in a way that keeps me safe.
I would never buy anything without full ingredients.
I would never buy anything without checking that it was safe. For me, that means avoiding the four foods that trigger a serious reaction for me e.g. nuts, dairy, soya and wheat
I would never just rock up at a restaurant during a busy service and expect a three course meal. But it should be possible to still eat out.
I should be able to buy Steak and chips or Ham, Egg and Chips. I should be able to order a salad or something simple. Or ask for a meal without the sauce.
Having translation cards even in English should help. These can be given to waiters to show to the chef and can explain what allergens the person needs to avoid.
This is just the start…
I am pleased about these regulations but we still have a long way to go. It will still take a long time for them to be agreed and put into place. It will then take food service establishments time to understand and implement any necessary changes.
If you think about disabled access, this is now seen as the norm. I can remember not so long ago when this was not the case and it is now expected that all public places, including restaurants should have disabled access and facilities.
Also vegetarian and vegan choices. When people first started to go veggie it was very hard to order anything suitable in a pub, restaurant or cafe. It was unusual. It was weird. People didn’t understand but now it’s perfectly acceptable and most places have a choice of vegetarian options.
The smoking ban could also be used as an example. There was a outcry at first that it would never work, but it did.
It will take time. It will take years. It will take more mistakes, sadly…
But I hope that we will see a time when it is the norm to have allergen menus, to always have options that are safe for allergic diners and for people to understand fully the consequences that a mistake could mean.
What are your thoughts? Are these regulations a good thing? Will they be bad for hospitality businesses? Will they work?
I’ve been taking methotrexate now for 12 weeks in the hope that it will help to heal my eczema and allow me to stop using steroids, which have stopped working for my skin, but that’s another subject altogether. I’ve touched on TSW or topical steroid withdrawal here before but watch out for much more in the coming months.
Methotrexate, folic acid and Epaderm
Methotrexate is not a drug to take lightly. It is used to treat psoriasis and also cancer in much larger doses. It works by dampening the immune response, so it can cause those taking it to have a lower immune system, something which worried me greatly when researching whether I should take this drug.
Am I just another guinea pig?
It often feels like this, when you have a life long condition and medication isn’t working, you get offered this, and that and another stronger drug. I worry that I am being given something that my doctor is not convinced will work, however he was confident that it would be very beneficial. The advice is to take Methotrexate for at least three months to see if it will work.
Is it working for me?
I’m really not sure yet. Parts of my body, mostly the skin you can’t see is remarkably clear. My back, torso, upper arms, shoulders and legs are amazing. Really clear skin and hardly any itching. The skin feels soft and is getting better by the day, because I’m well aware that what I think is good skin, my doctor often thinks is not! You get used to your normal and my normal had become anything but good healthy skin, which is why I’m now eligible to take this drug to help with my skin.
My hands, lower arms, face and neck and particularly the area around my mouth have been awful. These areas were bad before I started this medication but initially it feels like these parts of my body are far worse. This could be because I pretty much went cold turkey on the steroids when I started taking methotrexate.
My hands have been like crusty, elephant claw hands, dry, thickened skin, itchy and flaky. I’m pretty sure that I can see healing though. There is clear skin between the thick dry patches. And whilst this feels like a very slow and painful process, it could just be working…
My face is horrendous. Swinging between red and sore and really really painful and dry, flaky and irritable. Then a few days of relief before this cycle continues.
Important things you need to know before taking methotrexate
The dose is vitally important. You MUST check the dose. I am on 10mg once a week and I take 4 x tiny 2.5 mg tablets. Always check before taking to make sure you’ve been prescribed the right dose and are not taking too much. This is potentially a dangerous drug. e.g. My most recent dose, taken this morning was a 5mg table so I took two instead of the usual 4 tablets. It is very important to check every time that you are taking the correct dose.
Always take it once a week, on the same day, every week – so I now have Methotrexate Mondays to help me remember
Take Folic acid a few days after you take your dose of Methotrexate as this can help reduce any side effects. Methotrexate can cause an increase in homocysteine, and folic acid helps to counteract and minimise the effects, should this happen.
DO NOT DRINK ANY ALCOHOL – this is also really, really important. If you don’t think you can handle this then don’t take Methotrexate. I’m not missing the booze at all
You’ll need to have regular blood tests – so far I’ve been having fortnightly blood tests to make sure I’m not reacting badly to the drug. So far my
Side effects – Methotrexate or TSW?
Overheating and night sweats – I am having issues with night sweats and day sweats, particularly mid morning, but this is manageable, especially now I am working from home and can sit quietly or get myself cooler far more easily than in busy air conditioned hot stuffy office. The night sweats happen about an hour after falling asleep. I wake up without fail in a confused itching state, my face a raging ball of fire and often feeling hot all over. I have an air purifier in my room with a fan so this can help to cool me down in the night. I’ve found the best way to break the cycle is to actually get up, get some water, drink, calm down and go back to bed. I can usually get back to sleep after I’ve done this.
Pain is also an issue. I think this is caused by the steroid withdrawal, but when I get a flare, the pain in almost unbearable. I wake often in the night with the same pain, but it is short lived. It flares along my lower jaw, around the face like a crackling electric barbed wire mask but usually subsides eventually. This happens first thing when I wake up too but again, subsides. I don’t know if anyone else gets this?
Stabbing pains – these occur any time and are distracting and irritating but I’m getting used to them. I try to manage this by stroking my arms, which is where they mostly occur. Or hold the skin where it hurts until it subsides. Distracting when they are coming every few seconds. I can usually ride out a wave of these… but it can take an hour to subside.
I don’t think I have any side effects other than these, which could be nothing to do with Methotrexate. I have no effects to my blood, which is being checked regularly.
I will keep you all posted with my healing… trying to photograph progress but I’m really bad at getting photos to really demonstrate what it looks like. My skin overall does feel softer and I really hope that it will heal…
I’ve been wanting to write about my topical steroid withdrawal journey for some time because it’s fascinating and it is improving… slowly. One step forwards, two steps back, that kind of improving. So sometimes it’s infuriating but it’s something I have to go through. I am now about 11-12 weeks into TSW and let’s just say it’s been interesting. The body is an incredible instrument and I am amazed at the pain it can generate, but also the capacity for healing, if we let it!
I’ve held off writing because I’ve been angry. I’ve been so furious that this is happening. This on top of everything else…
I mean seriously?
And I don’t want my lovely blog to be all ranty and negative. Because ultimately I’m a very positive person, so it’s hard to say bad stuff. I bottle it up because it often doesn’t help to moan about stuff.
But it’s so important that I talk about this because I have written many blogs about the correct use of steroids and my own personal miracle journey with Protopic. I now feel complicit in some way with the pharmaceutical companies and doctors who still believe that steroids are a safe first line treatment for eczema.
I trusted them and have used varying strengths of steroids and most recently Protopic, an immune suppressant, for years.
They worked. Really well. Protopic gave me over five years or normal skin on my face which at the time was a miracle and amazing to experience. What I now know is that the red skin on my face that I needed Protopic for was actually topical steroid addiction or red skin sydrome. People told me they thought I should investigate this but the pictures and stories I discovered filled me with complete and utter dread and horror. I couldn’t cope with this. The pain, the misery, the infections, the swollen, red, sore skin that went through withdrawal for months, years and in some cases 3-4 years.
What kind of sick joke is this? Through no fault of my own I am a drug addict and the pain of going cold turkey is phenomenal. It is worse that the pain I experienced with shingles and it is deep, relentless and merciless. And it can go on for months or even years…
My skin will ooze, split, flake and hurt. It is nothing like any eczema I ever had. It never bleeds any more, just oozes and weeps.
Skin on my arm two months into topical steroid withdrawal
The skin above looks awful and it was. But with epsom salt baths with tea tree oil each day and gentle massage and exfoliation I am able to create an illusion of calm and get through each, with copious layers of Epaderm.
As I write this I am thankfully in a period of calm and healing between the flares. That’s not to say there is no pain, just less pain. Pain that causes a horrific uprising of heat, red skin, swollen face and stabbing pains, electrical currents and a kind of pulsing, wave like sensation that ripples across my neck, face, hands and forearms.
I can get through this though. And I will. I really believe that we can all find relief from eczema and red skin syndrome. Not perhaps a complete cure or eradication. I think we will all have a tendency to flare and have skin that reacts to surroundings, but this… this topical steroid addiction and now withdrawal is the stuff of nightmares.
Please watch this video if you’re interested…
Preventable – Protecting our largest organ
PREVENTABLE: PROTECTING OUR LARGEST ORGAN - DOCUMENTARY - YouTube
I wept watching this. It made me angry all over again at how the medical and pharmaceutical industry have created this monster and now refuse to acknowledge or respond in any useful way.
But most of all it gave me hope. Hearing from such beautiful, courageous people who have been through this is truly humbling.
I am thankful that my skin is not as bad as many. I never used the steroids correctly, always sparingly. When my doctor was telling me things like, ‘Use as much Protopic as you want, use it every day, I’m happy for you to continue using it…’ and ‘Elocon won’t thin your skin, use the full course, continue to use once it’s healed…’
I never really felt it was right. So I never used enough. I was always trying to taper my doses and reduce the amount I needed to use and only ever used as a last resort when skin was really flaring. I hope this will mean that my TSW journey will be shorter than some.
So far certainly I can cope. Yeah it’s painful but the pain doesn’t make me want to use steroids again.
The pain makes me realise how dangerous this drug is and how much I need to fight this and tell others of the dangers.
A lovely Insta friend Holly Broome or @TSW_Hollybee as I know her on the Gram, has started an online campaign to raise awareness. Using the hashtag #thisisnoteczema we all hope to raise awareness. And by sharing our before and after photos we can show just what the journey involves.
So as the anger passes (I’m getting really good at channelling my anger) the passion takes over. We can prevent this by taking a more holistic approach. We should look first at what might be causing eczema, not reach straight for steroids.
I’ll share more on what my symptoms are like and how TSW feels for me. If you want to get help and advice, your doctor may be sympathetic, although most do not accept this condition at the moment. Mine is dismissive but I am doing this for me regardless.
There is a Facebook Group and an organisation called ITSAN who are trying to help, support and raise awareness.
Are you going through TSA or TSW? Do you think you have Red Skin Sydrome? Are you worried about using steroids for eczema?
It’s a bit like the elephant in the room. Sometimes I don’t like to mention it. It consumes my life in so many ways that I often want to just keep this shame to myself. That sounds dramatic, I am not ashamed of who I am, but sometimes, especially in company, when I’m feeling anxious I don’t want to share this thing about me… which is stupid and unhelpful.
After a recent very bad anaphylactic attack and the ensuing treatment and recovery, I’ve kind of bottled up how I felt about it. I had a really good excuse not to discuss it, because it happened at a public place and the incident is now under investigation. So understandably it’s not helpful for me to be shouting about what happened, despite how angry, confused and scared I have been feeling. So I’ve been keeping things to myself.
This hasn’t helped me to recover mentally from the reaction. Because this was the worst reaction I’ve ever had.
My friends and family, who followed me to hospital (I was in the ambulance) tell me they were not able to see me until hours after I was admitted. Many hours. Usually these allergic reactions, whilst painful, scary and violent are stabilised fairly quickly once I’m at hospital.
So what happened? What did the doctors do for me in hospital?
Why did it take so long to stabilise my condition? After a night in intensive care under constant monitoring I am keen to understand what was different about this reaction. I always have so many questions.
I’ve kind of been in denial but am now picking up the pieces and doing my own investigation into exactly what went wrong from my perspective. Because I NEED to know… what could I have done differently? I’ll be sharing my analysis of the event in as much detail as I can without giving away anything important so that I can help others. Because mistakes were made, and I’m not talking about the food I was given, which contained milk. THAT is a whole other conversation for much later in the day.
We need to talk about anaphylaxis
What I wanted to say here really is that by not talking, I’ve kind of isolated myself from life. I’ve had to in lots of ways, that’s how I’ve coped with feeling safe. But that hasn’t been altogether healthy.
I’ve also found it impossible to talk in any great detail without descending into floods of tears, or feeling them coming on and just ending the conversation or changing the subject.
It has got easier though, as these thing always do.
Please, please talk about allergies and anaphylaxis. Ask questions. Find out how serious an allergy is. Because not all allergies are the same. Some people say they have an allergy because it’s easier than saying they have an intolerance. Some of us are so frightened about what our particular allergen could do to us. We need you to listen, understand and be honest.
We need your help to keep us safe. We have to trust that people understand and are telling us the truth. That’s the bit I am finding very hard at the moment.
Despite all this, I have eaten out since this happened, but I am VERY choosy about where I eat and if I’m at all concerned I won’t go. I have missed friends birthdays, work lunches and evenings out. I’ve been to parties and not eaten anything. I’ve lied and said I was busy when I wasn’t. I’ve felt that anxiety coming over me and made my excuses.
I have also had meals at two very good local restaurants near to where I live and also continue to frequent Nando’s and Pizza Express where I do feel safe.
My family and friends have also been amazing. Without you guys I don’t know what I’d do. The family meals are always completely safe and we all have Nando’s cards!
But what I wanted to share most of all is the importance of talking. And for me writing about it. I am journalling and writing down how this makes me feel because I have always turned to the power of words at times of pain and anxiety. I find writing so therapeutic and healing, as well as very revealing and difficult at times, but what I learn from doing this is often profound.
Don’t bottle up those feelings of fear. Talk to friends and family. Tell them how you feel. Tell me here! I’d love to hear from anyone who has anaphylaxis of struggles to care for family or friends with the condition. We can only make things better by improving understanding and awareness of the severity of serious allergies.
What happened to me only happened because people did not understand how serious my allergies could be.
I will not stop talking about this. Never! It seems amazing to me that anyone can be unaware with so much news coverage of the tragic Pret sesame death and the Indian restaurant owners who were jailed for serving meals containing nuts that resulted in the death of a customer.
These were unavoidable deaths. All we have to do is talk, listen and take it seriously.
Have the guts to say you don’t understand. Say no. Turn me away. Please tell me you can’t cater for me or you have no idea if food is safe. Because I honestly don’t think I will survive another anaphylactic attack…
Plant-based food and veganism, the free-from movement and booze-free beverages have been identified as the top three trends which impacted food & drink businesses in 2018, according to new research by The International Food & Drink Event (IFE).
Sharing a picture of my beautiful sister here with my favourite plant milk company, Oatly! Oatly plant milk – the Post Milk Generation
They’ve certainly been trends for me.
The popularity and rise of veganism is great for anyone with a dairy allergy, but having such a limiting diet already (I’m allergic to all nuts, all dairy, soya, wheat, chestnuts, celery, tomatoes, kidney beans and broad beans) restricting my diet any further necessarily would not be great for my health.
I have significantly reduced my meat intake though and really enjoy vegan and vegetarian meals often.
So what do these trends mean for us?
For vegans it’s fantastic!
For animals too! Win win.
For the planet, veganism is far more sustainable.
But I’m not so sure for people with allergies.
In my own experience more and more restaurants are offering what they might truly believe is freefrom.
But to the customer with a life threatening allergy, this is potentially fatal.
There seems to be a far more worrying trend of deaths from anaphylaxis and certainly in the last two years I’ve had two horrendous reactions where I’ve been given food containing milk, yet the food establishment had assured me on both occasions that it was a dairy free meal.
I think the staff believed this to be the case. The alternative scenario is impossible to believe, no one actively tries to make people ill by serving the very food they are allergic to.
This happens due to misunderstandings and mistakes. So hopefully there will also be a rise in food allergy training and awareness. It’s certainly needed!
So with these trends comes more danger. It is less safe to eat out at the moment. I think more restaurants are playing lip service to freefrom but failing to understand the implications of this.
Allergies can kill.
If you don’t understand, don’t say you do. If you’re not sure, or think your pub/restaurant is unsafe, say so.
If you haven’t checked the label, be honest.
If staff had been honest with me I would never have eaten the food.
If anyone, on both occasions had said, “We haven’t checked the ingredients and we don’t know what’s in this and we also don’t really even know what dairy is..! I would have quite happily gone without.
I love my life. I have a beautiful life and amazing friends and family. I have so much I still want to do.
To all you allergy people out there!
Don’t eat anything if you haven’t seen the list of ingredients and explain calmly and sensibly how serious your allergies are.
If you don’t have an allergy, can I ask that you please STOP saying that you do.
Because if I hear one more person say they’re allergic to dairy and then I see them tucking into cake, biscuits, ice cream… WHAT are you doing?
You do not have an allergy. You choose to reduce your dairy intake but by saying you have an allergy you make life so much harder for me and others like me.
Be honest. Explain that you don’t have a life threatening allergy, you just try to reduce your intake.
Because freefrom is here to stay. It’s on the up!
And let’s not forget the booze free drinks! I know my eczema would be so much better if I cut out alcohol and I have reduced my intake significantly, but for now it’s something I enjoy. In moderation. My skin does suffer but I am finding I can enjoy just one drink and be satisfied with that.
Shame about the carnage at the Christmas work do… but more about that in my next blog post. I nailed the safe food but failed to drink water in between each drink and succumbed to the sambuca again… argh!
PS. If you want to find out more, check out this event next year: The International Food & Drink Event (IFE) is the UK’s leading and largest food & drink industry event, taking place 17 – 20 March 2019 at ExCeL London.
I thought I’d write about this because I’m taking my anger out on others. I am very angry at the moment.
And for that I apologise. If you have been on the receiving end, I am sorry. I don’t want to feel like this.
I have already apologised in person but I’m doing again. For the world to see.
Sorry to the Plusnet person… but seriously you better fix my wifi or I will be livid!
And I’m sorry to the people I work with. Nothing is really that important to get so upset about. Life is too short.
But I’m still angry…
Angry that I have a life threatening allergy to nuts and diary.
Angry that I have just had yet another avoidable anaphylactic reaction.
Angry that I cannot do anything about it.
I’ve been through this process before in September last year and I have learnt a lot about how to cope, so I’m arming myself with all the protection and tactics I need to get through this.
I’m finding it invaluable to myself now and I wrote it!
But what I wanted to add to this is that through Cognitive Behavioural Therapy (CBT) I learnt that it’s OK.
It’s a normal reaction to have after what’s happened.
So I’m saying Hi to rage and anger.
Hello again my old friend.
I’m not getting angry with anger because that won’t help.
Instead I am examining it. Looking at it carefully and letting it sit with me.
For now it’s not going anywhere. But it doesn’t want to be with me. It wants to leave just as much as I want it to.
I’m spending a lovely quiet evening in with my rage and my tears tonight. I’m going to write down how I feel and I’m going to burn the paper I write this on. Thanks Nat @intolerantGourmand for this reminder. I have done this before but had forgotten how powerful it was at helping me let go of past anger.
I won’t be sharing what is making me angry.
This is private. This is just between me and my rage.
Please respect my wishes not to talk about what has happened to me. I can’t at the moment but I will, all in good time.
Because I have learnt a lot and want to share it with you guys.
But watch out. Don’t annoy me because you just might get more than you bargained for…
The emotional cost of living with a life threatening and life limiting condition is very underlooked.
It isn’t treated. There is no cure.
Though we all carry around our Adrenaline injectors, our first line of defence should an attack happen, we don’t get any help dealing with the daily stress, exhaustion, exclusion, anxiety and pain living like this causes.
I have been so lucky to be able to self refer through Healthy Minds but I think this is only available in Buckinghamshire. I would highly recommend Healthy Minds to anyone in the area. It’s been a lifeline to me and I feel so privileged to have had this opportunity.
Are you angry? How do your allergies make you feel? Let’s chat. Together we make some of the pain seem less unbearable.