Frustrations and warmed by generosity

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I’m sure I’m not the only one for whom this image is a good depiction of when you are trying to just do a “normal” food shop at the moment. Not to stockpile or panic buy. Just to do a normal food shop.

For us, it hasn’t even been to do our main food shop – which is normally twice a month. This has just been as a result of trying to do a top-up shop and also to try and place my normal monthly online shop for delivery next week! As a result of stockpiling and panic buying, we have been struggling to purchase the bare essentials for our children to eat. What’s worse, is that these are mainly specialised foods – non-mainstream long-life milk, special flour, gluten-free bread. Free from chicken nuggets?! I know that there are others with allergies needing food, but we all shop normally and we always can buy what we need. For the shelves to be empty of these products it either means those with allergies are stockpiling, which from what I’ve seen in discussion groups is unlikely, or those without allergies are now buying the free-from products.

For us, this is not a case of we like to buy the more expensive, free-from options. These are the only foods we can buy without our young children getting really ill. And I know we are not the only ones who have been affected by this. There are friends around the country saying that they are struggling to buy the free-from products they or their children use.

But the flip side of this is we have seen a huge outpouring of love from friends and family as they try to help us source the food and milk we need. We have had deliveries just appear on our doorstep. Friends and family near and far stepping up to offer help. We are so grateful.

The other element we are having to face at the moment is a little boy who thrives on routine and his normality is having his “world” turned upside down. We all know these are for good reasons, but for children with various additional needs, these changes are causing huge problems. I know friends who are having to go into isolation with their children for 12 weeks as it’s for one of the family member’s best interests. I have several friends that this virus for them or a family member would likely be fatal. So we know these measures are necessary. However, for some of us, it is harder than others.

For us, this has meant we needed to set up a Lego play space for our little boy. As I have mentioned before, lego is the one activity that calms him and helps him focus. But with him sharing a bedroom with his 15-month-old sister, this is tricky. So for now, she will only go in their room for sleeping. We will keep her out of the room the rest of the time, as she is still frequently putting things in her mouth. This isn’t ideal, but we’re having to make things work.

I’m investigating online toddler group and activity sessions with songs etc so that we can watch to keep him engaging with others. Life is going to be a strict learning curve for sure.

I’m just asking that people moving forward stop and think about what they are doing, saying and sharing. Keep to the government facts. Stop and think, do you really need to keep an online shopping slot reserved every week for the next month? Do you have a neighbour that needs help? What can you do to make life easier for others?

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Asking for help is totally ok!

Yesterday evening I read the sad news that Caroline Flack, a 40 year old TV presenter has taken her own life. While she made mistakes in life, the press and society seemed to make more out of her troubles than try to help her. And how many of us read the stories or saw the pictures of her falling around drunk?

But more than this…. why as society do we make it so hard for people to ask for help? She should have had everything to live for, but she also obviously felt like it wasn’t enough. It’s so hard to hold your hands up and say you struggle. I know that from personal experience. No, today I’m not suicidal, but 24 years ago I was. I was at that lowest point. And I didn’t know that I could ask for help. Society didn’t talk about mental health. In fact I was made to feel ashamed about taking an overdose. I was made to feel like I was the problem. It took another 20 years to be cold enough to start talking about my battles with anxiety and depression.

Being there at the lowest point, feeling like you have no other option, is a dark lonely isolated place. Unless you’ve been there it is hard to understand. People look at the life you project outwardly, and assume that that is the whole picture. They love the rose tinted perspective they see. Today it’s like the social media portrayal that people put out. Only show the best and the positive or the humorous bits.

But life isn’t like that in reality. Really isn’t black and white. It’s blue, green, pink, grey, yellow and many more colours. And while for you, yellow might be positive, for the person next to you it might be negative. Rather than assuming that they see what you see, take the time to stop and to smile and to ask how they are and what they see! Those words our actions might be the thing that changes their day from a negative to a positive!

And if today you’re the person who is feeling that the world is black, hard and pointless, then please also remember you are not alone and there are people to help. Life is a hard road to travel, but there are some amazing highlights even on the darkest days.

What is ok and what is not?

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One of the things I have found in the last few weeks and months is that my perceptions of what is ok and what isn’t are changing. Some of this is through psychotherapy, some of this is through experiences, some of this is through talking with friends.

I have seen things posted on line and shared in several places that are unhelpful and unhealthy. Images and quotes that have made me doubt myself, my opinions and my decisions. Things that have made me question those around me. There are 2 things I really need from those around me at the moment….consistency and loyalty.

When I say this, I don’t mean in a pompus, clique-y or sorority type way. But I mean in a way where I know who I can and can’t rely on. What is going to be stable in both mine and my families lives. What is going to be helping lay the foundations for who I am becoming.

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I’ve also seen things about who to rely on. And that online support is unhealthy, is unreal and is living in a fantasy world. For me, in reality, some of my friends that I know mainly in an online or digital capacity are some of my greatest support. Some of them I have met once, some of them I have met several times, and some of them I have never met, but they are their to support me, to encourage me and to help me achieve the best in who I am. They counsel me and help me process, in the same way that friends I see face to face do. In fact, some of those who are digital friends are the people I see frequently face to face. But that doesn’t mean that those who I have never met are worth any less.

With my depression and anxiety, friendships are hard to maintain. I know that they take a huge level of understanding from my friends and my support network. People need to know that I need to know who I can trust and when and where I can rely on them. If people let me down, then I will walk away as the energy that relationship takes from me needs to be invested in my family and other relationships.

What’s worse though, is that I know I am not the only person experiencing this. For many of my friends with a baby under 1, friends have become a rarity. People aren’t being bothered to take the time to invest in them now their priorities have changed.

New mums need the support the most. Whether it be a new mum for the first or the fifth time. Every new small person into a household mix takes their mum away from the “normality” that existed pre baby. But that doesn’t stop the mum from caring. It is then that she needs it more, but has it the least. So be a friend. Don’t stop caring cos one day you’ll try to care and it will be too late.

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Realising some people don’t have a clue!

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One of the things I have had to do in recent weeks and months is learn that it is ok to put up barriers and set boundaries. This is actually healthy. I’m also learning how much I need to value and respect myself and my time. This has meant I also now know that my friends should be respecting and valuing me in the same way, and they should be placing a level of value on my time.

Sadly I have also realised that some people don’t do this. I know that all people are fallible. I know that we all make mistakes. I’m certainly not saying that I don’t make mistakes or upset people. But I have realised that trust and respect come hand in hand, and both have to be earned and maintained. Once it is tossed away, the damage can be irreparable.

My priorities have to be my faith, my family and myself. My self care includes making sure I surround myself with those who are building me up and not knocking me down. This doesn’t mean only surrounding myself with people in positive happy moods – in fact, I have been able to be a support to others while working through things for myself. And knowing I can be, really does help. But what it does mean is making sure that those who are in my life add value in one way or another.

For example, I have an amazing network of support that I have talked about before, thanks to a group of mums I met online who all gave birth at the same time as me. They are there pretty much 24/7. They know me so well and can build me up on my down days, celebrate with me on the good days, and make me laugh most days! The time I invest in them is so valuable to me and I know they are there.

But I have also learnt that some physical friendships are more one sided. I have learnt that my expectations of people and their commitment to time and relationship building can be different to the other person. And because of the loyal person I am, I have ignored this, but I didn’t realise the damage that this was doing. So I am now trying to be selfish in someways and say this isn’t healthy for me.

People say “talk it through with them” or “they may not know what they are doing”, and I totally understand that this is often true, but  the place I am in at the moment means I don’t have the energy for the confrontation or the emotional space for it.

I know this post could be seen as “controversial” or stirring the pot, but as ever my blog is honest and where I am at. I won’t be answering people who ask “Is it me?” in response to this, as actually that will show how little they have taken in.

Life is a cycle of seasons. And friendships can move in those seasons, and that is 100% ok.

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Realising what is causing damage

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One of the things that I have started to realise over the last few weeks, is that there are certain things that trigger emotions and reactions within me that I don’t expect. I have realised that some people live in their own bubbles and miss what is going on in other peoples’ lives. Sometimes this is intentional, and sometimes this is completely unintentional. And this really sucks.

It makes me put up barriers in relationships as I take personally things that were never intended to be personal. That were written without any thought of me. And that is ok. That’s how it should be. But I need to find a way to cope with this and to accept that these are not aimed at me.

This has also made me more aware of what I share and how it can be perceived by others. It’s about remembering not everyone has the perfect relationship, had the perfect childhood, has the best relationship with their parents. Not everyone gets their happy ever after. Some people have to kiss a lot of frogs. Some people are having to discover who they are. I am still having to discover who I am.

At the moment the only way I can cope with this is to put barriers up and shut myself away. Cut myself off while I re-evaluate where I am at, and give myself time to recover. And I know that this then confuses people. It isn’t easy to explain to anyone, it’s just how it is at the moment. I don’t always understand it myself. I just know when it happens that I cope the best way I can at the moment.

This week I have had to deal with a middle of the night panic attack for the first time ever. It was scary. I don’t know what caused it and I didn’t know how to manage it, but I managed to get myself back under control after a couple of hours. The only way I have been able to cope since is to stay where I feel safe – my home. I have seen a couple of people, but in my space. I know I will have to face the fear of going out again soon, but that battle is for another day. The anxieties running through my head some days are crazy! They are often irrational. They are almost always unfounded.

I can’t explain the ins and outs of PND for everyone, or say how each individual will be affected. All I can say is what affects me. For me anxiety and obsessive and controlling behaviour are 2 of my big “symptoms” of the post natal depression. I don’t understand why, and i really don’t understand the nuances of it at times – why the position of a knife in the kitchen drawer will drive me crazy, but i’m ok putting away a sock without a pair for example. It’s illogical, and I know it is illogical, but it is how my body is and I am having to learn to manage it.

Writing this blog helps me express where I am at. At times I struggle to vocalise it, even to my amazing husband. But I can write it down. My only hope is that my musings and downloading of how I’m feeling helps someone else out there.

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A fine line….

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I’m discovering how there is a really fine line between me feeling up and me feeling down. I often don’t know when I am close to teetering over the line. I am starting to recognise the triggers though. As I posted a few days ago, I have had a really positive few days. But I also knew that this didn’t mean I was permanently back on the up.

This afternoon I have felt myself sliding back down. Parenting three children (and yes my teenager is still my child) is a juggling act. As I have said before, all 3 have different needs and demands on my time. This week I have been having to manage a toddler who has had an allergic reaction to another food. As a result, he has been crabby, clingy and just not himself. Juggling that with a 6 month old who is trying to reach further, move more, do more, but constantly toppling, and also needing greater input and awake for longer, has been exhausting. The break in the madness was then going out for half an hour to pick up the teenager! But all of this, combined with an early start, and a full on, but highly enjoyable day before, has dragged me back down.

I am still having to learn where to draw a line and give myself a break. When I topple over the line, I find myself getting into bad, negative cycles. I start to compare myself, my life, my children with those of others. I compare with friends, with relatives, with strangers who post in random places on social media. I get myself down because I feel I am failing my child(ren) because they are not achieving their maximum potential.

I struggle because my baby isn’t keen on eating, when my friend’s child who is younger will chomp through 3 meals. I struggle because my toddler isn’t as eloquent as other children his age. I struggle because I can’t do with my children everything I feel I should. I struggle because I don’t want to leave the safety of my house. I want to stay in my safety blanket. I know I need to find space to stop and take a break when this happens, but it is finding the safest way to do that.

I know I made a mistake when I got to a similar point when my toddler was younger. I cut myself off from people completely, and nearly lost completely some very valuable friendships. This time I am trying to get the balance right. To be able to take a step back without cutting everything off. I’m still not always getting it right, but I am trying, and I am learning.

I hate the struggles that PND gives me. I hate the impact it has on my life at the flick of a switch. But I am learning that I there is a trigger, and I am trying to stop the switch being flicked.

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Allergy fun…..when all the best plans…

This weekend we had the total privilege of witnessing the marriage of one of my longest standing friends. It was an amazing weekend, but that kind of event for us always comes with a few stresses.

Our friends were amazing in their catering planning for the weekend, providing lots of food for me to eat with my allergies, and lots for my eldest son too. We had agreed in advance we would provide the food for the toddler, as we know it is hard to cater for all his allergies.

So with all the best laid plans, there also comes for me a level of anxiety as to the what-ifs that can happen. And we survived the first 24 hours without a hiccup. But with 21 other people around, who are aware to a point, there is always going to be a degree of risk. With a mobile toddler though, you at times need eyes in the back of your head!

We don’t know what, or when, our little guy picked up something he shouldn’t  have, but somehow he ate something he was severely allergic to. An unhappy, itchy baby was bad enough, but the sickness that followed was on another level. I was so grateful for the help of new, but wonderful friends, who jumped up to help so we could sort out a very unhappy little boy.  As ever what amazed me was once his system had rid itself of the allergen, and he was cleaned up, out little boy was back to his happy, chatty self! He tucked in to more, safe, food, and merrily chatted away to people.

We will never know what he ate, if it was a known allergen, or a new one, and that makes it tricky, but what I am learning is that we can only do so much. There will always be a time when there can be errors and slip ups. We try to minimise the risk as much as we can, but we also want our little boy to enjoy life and have as many similar experiences as other children as he can. But we will also spend time raising awareness with others about the dangers of allergies.

No, he currently doesn’t have an epi pen – as currently all his known allergies are non-IGE. But that doesn’t mean one day his allergies won’t become IGE and result in anaphylaxis. It also doesn’t mean that even a small bit is ok. Too many times we have heard people say, “well a small bit can’t hurt can it?” The answer is yes, a small bit can do a huge amount of damage to his gut. As an example, testing mackerel – just a teaspoon of it – resulted in 4 weeks of his tummy being unable to hold any food!

Things are not going to be easy for a potentially long while. I will permanently be grateful to our child minder, who provides him with a safe environment which he adores. To friends who help us have safe play experiences. People who will have him to stay and even provide him with food, which is not always the cheapest or most straight forward option.

Living with allergies and living with a child with allergies isn’t easy, but it is what it is. What I am learning on this journey, is that I need to stop letting people make me feel like it is an inconvenience,but it is ok to be honest and say it is a problem.

Allergies can be isolating & apparently inconvenient!

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This image says a lot. It says how it feels to be the mum of a 5 month old baby with 6 known allergens, without even starting on food. The outline at the end highlights how I feel about introducing food to my baby. It honestly terrifies me!

But what this image doesn’t show is some of the isolation that comes as part of the allergies. Picnics in the park are only going to be possible on days when the pollen count is low, and even then I will be armed with antihistamine plus other bits we use to help keep the pollen at bay. If I don’t, then I will have a very uncomfortable little boy, with scratch marks all over his face as he scratches in response to the pollen irritating his skin, his eyes and his head. Even sitting in our own garden, which soon will have no plants or real grass in it, can cause reactions and we don’t know what to. It’s isolating as it is hard for us to leave him to go out. At the moment the allergens are so unknown leaving him with someone else is hard.

The isolation from conversations I can’t join in because “weaning” is going to be a very different process for us. All foods have to be introduced for a skin reaction and then an internal reaction before a spoonful can be tried.

Having to avoid key ingredients in food for the foreseeable future adds the problem of where we can go and eat. Using jars and pouches of preprepared baby food are not an option. Everything will have to be homemade until we have established what foods are also allergens.

Some people have made comments where you can see they don’t understand the implications. Yes a small amount of dairy can make my baby really ill. His contact reactions to some products like fabric conditioner are so severe the GP did an urgent allergy clinic referral. If he doesn’t have regular antihistamine when the pollen count is high then he struggles to breathe at night.

I’ve been told that his allergies are “inconvenient”. Yes they are….for him! They will be as he grows older too if he doesn’t outgrow them. Being allergic to sorbitol is probably one of the most “inconvenient”. Having to read the back of everything you buy to check the ingredients. It’s not a key allergen so it isn’t in bold like dairy or gluten products. It also occurs in things you wouldn’t realise, including toothpaste and shower gel!

It’s inconvenient that I can’t just pick things up from the shelves like every other parent. It’s inconvenient that I have to pay 2 to 3 times as much for products I have to buy – £5 for a tube of toothpaste! It’s inconvenient that I will spend an extra half hour or so on each shopping trip reading ingredients. It’s inconvenient that I have no quick wins on the first stages of eating. It’s inconvenient to have to go to various clinic appointments at the hospital as we try to understand all of the allergies and how best to treat them. So yes it is inconvenient for my baby and for me. Am I going to apologise if he is going to react to what someone else has on their clothes, or if I “over react” to him coming in to contact with a new substance or a known allergen…? No, I’m not. I will keep protecting him because I also see the consequences.

So yes it can be isolating. It is incredibly hard work to juggle at times. But it is who my baby is and I just have to deal with it daily.