The Sunflower Conversations

Long COVID and autism with Linda Dalton

Hidden Disabilities Sunflower

Long COVID and autism with Linda Dalton
Linda contracted COVID in 2020 and has been left battling the effects of Long COVID, the healthcare service and the Government in Ireland ever since.

Once a great lover of the outdoors and fitness she now struggles with daily simple tasks such as answering the front door due to chronic fatigue. The brain fog that she experiences means concentrating on TV programmes, remembering what items she’s looking for when shopping are severely hindered.

Linda is campaigning and raising awareness of Long COVID to be recognized by the Government and healthcare service in Ireland. In this conversation she explains the research that she has discovered.

The conversation also covers both her and her daughter’s recent autism diagnosis and how empowered she feels as a result. Linda now understands her behaviours and how she interacts with the world.

If you are experiencing problems discussed in this podcast contact your GP or healthcare practitioner.

For support

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.
Want to share your story? email conversations@hiddendisabilitiesstore.com

Chantal Boyle:

I'm Chantal and joining me today on the Sunflower Conversations is Linda Dalton. Linda has long COVID and is joining us today to talk about that. How are you, Linda?

Linda Dalton:

Hi, Chantal. I am okay today. I have a few symptoms today, but I'm okay today.

Chantal Boyle:

Okay. Well, should we start off by asking you, did you know much about long COVID before you got it?

Linda Dalton:

No. Long COVID only was first established, we'd say, last May. Advocacy groups started opening up. Long COVID was recognised in the UK and Europe, but not so much in Ireland.

Chantal Boyle:

When did you realise that you had long COVID? What was the steps between you contracting COVID and then realising actually, this is not going away?

Linda Dalton:

I had a very mild infection. Wasn't hospitalised. Didn't even have the cough, the famous cough. I had a little bit of a temperature. I lost my taste and I was quite tired, ate like a horse. I suddenly had this huge appetite even though I lost my taste. After the two weeks, you were supposed to come out of your quarantine and go back to work. But I, after two weeks, were suddenly getting worse and went to A&E with my heart. My heart is racing and doing silly things it shouldn't do. It was concerning me a lot. My breathing was getting worse and I couldn't take a few steps without having to gasp or stop, and that wasn't like me at all because I'm very fit normally. So all the warning signs were there. It was like two weeks of COVID, but after the two weeks, suddenly bang, everything went wrong.

Chantal Boyle:

So it sounds like you took a massive dip.

Linda Dalton:

Massive dip. Went to various doctors. Various doctors didn't know what to do because I was post-COVID. But then in December, after having many MRI, CT’s and various visits to doctors in A&E, I was then diagnosed with long COVID.

Chantal Boyle:

You mentioned that you were experiencing problems with your breathing and difficulty while walking, have you ever experienced breathing problems before? Do you have asthma or COPD, anything like that?

Linda Dalton:

No. I don't even smoke, nothing like that. Very fine set of lungs before COVID. I would've taught myself to be extremely fit, but when you're quarantining for your two weeks of COVID, the first thing you want to do is go outside and have a nice walk, fresh air. The fact that I couldn't take a few steps or I look like an old woman walking very slowly was just shocking to me. I was just amazed at how slowed down my body was and how it just wasn't able to cope with the normal way it was used to coping.

Chantal Boyle:

Is there anybody else in your family who had COVID?

Linda Dalton:

No. I was a very good girl so I locked myself in a room with an en suite. I have three daughters and one husband and none of them, still to this day, have got COVID.

Chantal Boyle:

I had COVID in January and we have a summer house in the garden, shed, I call it because it's not that big. I had to sleep in here for 10 days, which I wasn't very happy about.

Linda Dalton:

No, it's not. You're confining yourself. If you're used to walking at fresh air and being in nature freak like I am, being locked in a bedroom is you're almost like in prison. You're imprisoning yourself, but you know you're doing it for the good. But then when you come out two weeks and suddenly it's not for the good and you're suddenly worse, that's so hard mentally to take as well.

Chantal Boyle:

Presumably, you were probably worried then that you were still infectious, were you?

Linda Dalton:

Yeah, that's what happened. That's what most people thought before even educating themselves. If I was seen around at the village, I come from a little village, so my husband was able to either walk me out to the garden or drive me to the shop or the chemist would be more likely to get medications, people used to cross the road when the car is parked as if they could catch something off me, which was quite nasty because you never should assume anybody... Of course, as you know, its hidden illness, the hidden disability. These things are all going on inside my body. I look completely normal on the outside, but have this war going on, on the inside. So to the average person, I look as if there's nothing completely wrong with me at all. I happen to fight for that, having to explain myself continually. That's exhausting. [crosstalk 00:04:36].

Chantal Boyle:

That must have been really mentally and emotionally draining. [crosstalk 00:04:39].

Linda Dalton:

It still is. Still is to this day, yeah.

Chantal Boyle:

I think it's very good that you're able to talk about it in this sphere so that we can help inform others. Talk about your symptoms. You touched upon them briefly when you went to hospital. Can you run me through them?

Linda Dalton:

Sure. As I said, mild during COVID, after COVID, main thing was breathing. A huge pain in my right ribcage, like as if someone is stabbing a screwdriver in your right ribcage all the time. No matter what pain meds I had, and I was given even morphine, the highest pain killer you can have, still didn't get rid of the pain, which I was amazed with. I'd be sleepy, take in the morphine, still clutching my ribcage. I think I walked around with a hot water bottle for possibly the goods of 13 months, still do now and again. Heart, I've been diagnosed with unexplained sinus tachycardia. So basically sitting here now, my heartbeat is 105. I don't know why. I'm just sitting down. I'm not having to accelerate myself or push myself in any way. [crosstalk 00:05:40].

Chantal Boyle:

What should you do? I don't know what a resting-

Linda Dalton:

The resting heart rate for a fit person is about 70. When I was at my fittest, I would be resting heart rate, 55. I was black belt in taekwondo and I ran many marathons. My highest my heart rate would ever get running or doing activities in taekwondo was like 105, but to have a heart beat of 105 and then stand up and it goes straight to 148 for no reason, just standing, is awfully daunting and awfully frightening. So that was the heart. Then there was the brain fog. Then I had problems with my speech. I started stuttering. I knew what I was trying to say, but it just wouldn't come out. It's like my brain wouldn't work for me. I can't watch TV programs anymore. I love rugby and darts and I should have been a boy probably, but I like to watch a match and I can't follow the match now because my brain-

Chantal Boyle:

It's the concentration.

Linda Dalton:

Correct. It's too tired to take in the many little different either the sound, the light, the movement, everything. So I end up looking out the window at a still tree. That seems to calm me down again or to try and refocus. I have aches and pains in my joint. So basically, I'm like the Tin Man at The Wizard of Oz. If I sit down, I feel like I need 3-in-One oil or something to get me going. I'm very stiff and takes me a while to move. If I was alone in the house and the doorbell rang, I would take a long while to get there, or if I try to push, I'd fall. So there's the risk of breaking bones. There's the risk of falling and then we're left on the floor then until someone comes home.

Linda Dalton:

There's 203 symptoms associated with long COVID and I'd say I have ticked each one. You don't get them all in one day. You could get 60 one day, five the next, 90 the next, 120. It's so up and down. That's the crazy thing about long COVID. You don't know what you're going to get each day you wake up. If you did, you probably sort your life out, have a routine, have some structure, but because you don't know what you're facing each day, it's a nightmare, nightmare to deal it.

Chantal Boyle:

Yeah. I guess you are then in anticipation for what's coming next. You can't relax your mind from it, can you?

Linda Dalton:

But then you have to try and calm yourself down because if you're anxious in any way, your heart rate spikes, and then you have the doctor say, "No, you're just anxious," when you know you're not. There's an underlying cause for your heart beating fast, but you have to constantly prove to the doctors that one, it's not in your head, one, you're not making this up. It's just constant fights with people to almost prove you're sick because as I said on the outside, you look normal.

Chantal Boyle:

Yeah, whatever normal is.

Linda Dalton:

Yeah, whatever normal is, exactly.

Chantal Boyle:

The pain in your side, did they ever get to the bottom of what that was?

Linda Dalton:

They think it's costochondritis. So that's basically, you think the whole long COVID thing is everywhere in your system is inflamed. Even your organs, your main organs are inflamed. My breast bone reaching out to the right rib cage is inflamed, so that pulsates pain during the day. If I breathe faster than normal or get up and wash dishes or maybe blow dry my hair, straight away, pain in the ribcage. It's like as if they're on fire. It is so scary because I feel like I'm boiling on the inside.

Chantal Boyle:

You have now been formally diagnosed.

Linda Dalton:

I have indeed. I got it in October 2020.

Chantal Boyle:

2020, right. So-

Linda Dalton:

It happened 17 months now.

Chantal Boyle:

Right. At that point, we were in the first year, weren't we,-

Linda Dalton:

We were.

Chantal Boyle:

... of the pandemic? I guess not much was really known. They were-

Linda Dalton:

No. I tell the doctors everything now. I am the teacher to the doctor. He doesn't know anything, so I do the research for myself. I contact France, Germany, America, England. I'm doing all the work myself under the little spoons of energy I have. Long COVID, I don't think is a good name either. I think it should be called post-COVID multi-systematic disease. Because if you said that to a person, you met them on the street, "Hello. All my systems are affected," and are in disease format, post-COVID, people be like, "Oh, my God," a-gasped. But when you say long COVID, they're like, "Oh, you're still at that fluey, coldy symptoms months after."

Chantal Boyle:

Yeah, or you can't taste anything.

Linda Dalton:

Yeah, that's it. That's all you have. They just assume you have very little wrong with you and you're just prolonging the agony of going back to work and being normal. I will trade in anything to go back to normal and be normal.

Chantal Boyle:

You are listening to the Sunflower Conversations with Chantal. To share your story, details are in the show notes.

Chantal Boyle:

What is awareness and acceptance like among the medical profession and government in Ireland?

Linda Dalton:

Ireland is an absolute disgrace. There's still no long COVID clinics in Ireland. We're still being passed from different consultants to different consultants. So basically, I've spent nine times in Europe on eight different consultants last year because I had to see a neurologist for my brain, a cardiologist for my heart, infectious disease specialist and so on, so on for each different system. None of them got back together to compare or to understand there's a whole picture going on. So I have to tell each consultant what the cardiologist said, what this... And I'm sick. I'm that person who's not well. I shouldn't have to do this. The health minister in Ireland, the government in Ireland still have not acknowledged long COVID an actual thing. They haven't acknowledged it's a disability and my God, it's a disability. It's so frustrating.

Linda Dalton:

My original brain format is gone. I'm not me, the me I used to be. I'm 46, but I'd say some days I definitely feel like a 72-year-old with the energy capacity. Then the fact that I forget my daughter's name. My daughter's name is Daisy and I think I called her duck the other day. Now, I can see what my brain is doing is probably associating Daisy, the duck from a little book from years ago, but to not know your child's name, come on. You almost feel like you have dementia because your brain is doing tricks on you all the time. But it's just the fact that you have to deal with that. You have to deal with not knowing what symptoms you're going to have each day. You have to deal with mentally how you're just waking up each day and finding the will to just keep going on. That's so hard. So hard.

Chantal Boyle:

I was reading that women under 50 are 50% more likely to suffer from long COVID, which is interesting.

Linda Dalton:

That's a huge factor. That's actually true. So 70% of long COVID people are women under 50. They have now found out that it's got do with the X chromosome. Because we carry two X’s and men carry X and Y, that's why some men have this because they do have the X chromosome. It brings on early menopause. It can do. Yeah, I know, another thing to deal with. Like I said, we don't have enough to deal with, but it seems to trigger or happen a lot to women in their 40s, early 40s up to mid-50s for some unknown reason. They're linking that to autoimmunity. So anybody with lupus or Lyme disease or rheumatoid arthritis, they are associated mostly with women also. There is treatment options, but they are abroad, so I haven't been able to try them.

Linda Dalton:

The treatment options are hypobaric chamber oxygen. They confuse oxygen into your cells because they're finding we have millions of microclots in our system, and as a result of that, each organ, when the blood goes to each organ, it's devoid of nutrients and oxygen [inaudible 00:13:11] into the organs. That's why you brain fog because your brain at that time, it didn't get enough oxygen or nutrients at the same time because of your microclots, sticky blood, a huge traffic jam inside your system. In Germany, there's a microclot [inaudible 00:13:24] treatment. So basically, it filters out your blood and it gets rid of the microclots, and then you get your fresh blood back into you again. The only thing with that is the short term really. It's not the solution to the answer. It gives you about two to three months relief, but you're still very sick afterwards. You relapse because your blood, every 28 days, recycles itself.

Linda Dalton:

The hypobaric chamber, and none of these are available in Ireland, of course, that again is short-term relief, infuses oxygen into your blood. Systematically, you feel very well for the first few weeks then relapse because it can only last so long. Then the other one is HIV drugs. They're linking our disease with HIV because it's immunity and they're finding our T cells are being damaged or dying. As a result, each system is starting to degenerate. So I have 17 months of damage done. If I get onto HIV antiviral drugs now, I have some hope of maintaining a line of existence.

Chantal Boyle:

What's a T cell? Do you know?

Linda Dalton:

T cells basically are your cells that are in charge of your immunity. I'll speak for myself, so when I got COVID, instead of my antibodies were produced by T cells, and there was a huge amount of them produced and they got rid of some of the COVID, but they started attacking your fresh cells, your living cells.

Chantal Boyle:

I see. So the antiviral drugs for HIV, in other countries, are they using those to treat it?

Linda Dalton:

In America. They started in America. Now England have been brilliant. I do follow a guy called [inaudible 00:15:04]. He deserves a hero award if you ask me. He's gone to America to find out about this treatment.

Chantal Boyle:

Is he a patient or is he-

Linda Dalton:

He is a long COVID person himself and he is a film producer. He has a YouTube channel dedicated to long COVID people.

Chantal Boyle:

What's he called again?

Linda Dalton:

[inaudible 00:15:27] and Dr. [Asif 00:15:28] comes on the BBC News recently. He is over Germany currently getting the help about [inaudible 00:15:33] treatment for microclots. He's had 22 sessions. Now each session cost two and a half thousand pound. Not everybody has that money and you're not guaranteed you're going to get better. So why would you, do you know what I mean, risk going over for two weeks of hell, as I call it, trying to get better and then you're not guaranteed better? So I'd rather try the HIV antivirals. I've asked my own doctor for them. He said he can't prescribe them. It has to be under a hospitalised setting. So I've consulted all my consultants that I spent so much money on and I'm awaiting their response. So fingers crossed I'll be able to start that therapy soon.

Chantal Boyle:

Yeah, that would be really good. I'll have my fingers crossed for you. When you approached them about this, were they aware of it?

Linda Dalton:

No. Again, they're listening to a patient. They're skeptical a bit, but because I've been right up to now with any suggestions to help with any of my systems, they give me the benefit of the doubt.

Chantal Boyle:

Have you set up any support groups for people like yourself who are going through this in Ireland who don't have support from the medical profession?

Linda Dalton:

There is a support group called Long COVID Support Cases Ireland on Facebook. It's very good. It's not run by me. What I normally do is I do all the radio interviews and all the papers. So I'm contacted for that because most of the other people, they have problems with their throat or their voice or their breathing, whereas I have the ability to talk still, thank God, so I'm able to do all the talking.

Chantal Boyle:

So relationships, you mentioned that you did taekwondo before and that you like to run. What was your life like? Can you give me an insight into Linda's life before long COVID.

Linda Dalton:

I like my own company. I like to do things in the fresh air. I love nature, but my youngest daughter got recently diagnosed with autism. Now we knew she has autism from the start. She has dyspraxia as well. My family kept saying to me, you have traits of autism. There's something going on there. I get on very, very well with Daisy. We're the only ones that click and I don't seem to get on well with other people. So I got recently assessed for autism and I'm autistic.

Chantal Boyle:

Has that made any difference to your life? Is it [crosstalk 00:17:53]?

Linda Dalton:

Oh, it's answered so many questions. The best thing I've ever did. I highly recommend any adult. So I have [inaudible 00:18:00] combat in childhood, teenage years, being a young mum, looking after kids while being autistic and trying jobs. I'm failing and knowing now why I failed. But if you give me a job that's on my own or chatting or something that I'm on my own with, I am brilliant at it. Hyper fixations. I'm crazy mad into Eurovision, darts, motor racing. Like really crazy into like I have to watch specific things every day. I have to have the same routine every day, stuff like that, but I am absolutely so proud of myself for doing it. Things make so much sense now why this, that, and why I react to things, why people react to me certain ways. So now I find anything I'm very proud, very proud.

Chantal Boyle:

That's really lovely to hear because neurodiverse brain just works in a different way, doesn't it? You bring your skills and qualities a neurotypical brain doesn't have. To be able to understand and be proud of those differences is hugely empowering, I would imagine.

Linda Dalton:

Yeah. As the psychologists that assess me with the neurodiversity says, "You're typical first responder." My husband did have an accident years ago on a bike and he's on the side of the road, and then a neurotypical, not a neurodiverse brain, would be all over the person, weeping, crying and just very emotional and very anxious. Whereas my reaction was to, we need this, that, and this, very practical, everything had to be in a format. His neck is in that position, change it. I just was so practical, no tears, nothing, but by being that way, I probably saved his life because the ambulance was 40 minutes anyway by the time it came out. So there was no tears, but it didn't mean I didn't love the person,-

Chantal Boyle:

Yes.

Linda Dalton:

... didn't mean I wasn't upset, it just I approach things differently.

Chantal Boyle:

You were listening to the Sunflower Conversations with Chantal. To share your story and find out more information, details are in the show notes.

Chantal Boyle:

Your daughter, you mentioned, she's also had a diagnosis along with dyspraxia. Are you able to support her when she's noticing differences maybe between her and her friends or different situations that might occur? Do you think it helped her that you are also autistic?

Linda Dalton:

Well, she is the opposite. She helped me.

Chantal Boyle:

That's it.

Linda Dalton:

Yeah. Even when I'm being very sick with long COVID, because she's practical in nature and because everything is matter of fact and we see things differently as you said, it's a better person to be around when you don't need... Some days, obviously you need a hug and some days you're very sad. Most days you need practicality or switch the subject to something you like and talk about that and just change the scenery and it just makes the world different. Whereas other people are like, "Mom, you're disintegrating before my eyes. I'm too upset. I can't look at your eye. I don't know what to do. I need to do something," and that's lovely, but it's not helpful.

Chantal Boyle:

Would you say that this is what's enabled you to do all of the research that you've done? You are incredibly knowledgeable and the fact that you're able to share that with such a wide audience.

Linda Dalton:

Yeah. I hope that I play some part in helping other people have a voice, because I know there's a lot of people with long COVID or autism at home and not knowing where to turn, not knowing what to do, not knowing what to say. We are absolutely important. We are absolutely entitled to love, respect, and accepting.

Chantal Boyle:

So how has long COVID impacted your life in terms of socially? Work, you mentioned you worked before.

Linda Dalton:

Yeah, so-

Chantal Boyle:

[crosstalk 00:21:54] able to work now?

Linda Dalton:

No, I haven't worked now and I don't think I'd be able to return to work. I haven't got the energy capacity to do it or the mental capacity to take in instructions. Friends wise, socially, I don't have friends probably because I'm autistic, but my family, I have family. My husband, it has impacted our relationship an awful lot as you can imagine. It must be so hard for him to look at someone who is suffering so many symptoms each day, going through a completely new disease that no one knows anything about and no doctor currently cure. He must feel extremely helpless, so my heart goes out to him.

Linda Dalton:

I'd say it's very hard. If I was to switch roles, I don't know whether I'd be as strong. I'd say I'd be quite matter of fact and I'd be looking everywhere for him, but I feel it definitely impacts relationships. The autism impacts relationships. Of course, it does because I'm not as empathetic with him. I'm not as lovey-dovey, touchy feely. It just doesn't come natural to me. I don't know why, but it doesn't mean I don't love him-

Chantal Boyle:

Yes.

Linda Dalton:

... or love anybody else, it's just different for me.

Chantal Boyle:

There are different ways of expressing love, isn't it, and respect other than just the demonstrative side of-

Linda Dalton:

Exactly. I'm not a notebook. I'm probably something else, but I'm definitely not a notebook.

Chantal Boyle:

And also for your husband, where does the support for him lie? Your Facebook group that you mentioned, can partners of [crosstalk 00:23:36].

Linda Dalton:

No. We've thought of setting up one before for partners and I actually went about doing that. We started to get a lot of people on board, but do you know what? I think the partners, they deal with it so much daily that they need a break from it. To talk about it over Facebook, yes, I know where you're coming from. They do need support. I think my partner gets support from my two other daughters and the fact that he can go to work every day and he gets to change the scenery. He gets a break in the routine of Linda with long COVID, Linda with autism, Daisy with autism. There's a break and he has his motorbikes. He has his little hobby, his work, and his two other daughters, whereas myself and Daisy, we just delve ourselves into what we are interested in. We don't have the social aspect of it because we don't need it or we don't require it, but we, like me recently, ask me any Eurovision question and [inaudible 00:24:34]. I am Eurovision fanatic, so that's it.

Chantal Boyle:

And physically, what activities were you doing before? How far had you got with your taekwondo?

Linda Dalton:

Yeah, that's the sad thing with long COVID. Basically, we suffer from post-exertion malaise. It's very linked into people suffering from Lyme disease or chronic fatigue, ME. Basically, if we exert ourself in any way, so can be mentally exertion, could be emotionally or physically, we suffer a relapse, so we can get extremely tired, fatigued, and just like our battery... A normal human being will go to bed and sleep at night and they recharge the battery and [inaudible 00:25:14], it'd be 100% in the morning. For person with long COVID, ME, CFS or Lyme, because we're very linked in to each other, or any autoimmune deficient disease, we go to bed at night and hopefully have a good sleep. Some people suffer from insomnia. It's awful. By the morning, our batteries could be possibly charged only 30%. You do something the next day and it just hits you like a brick. You sit in a chair and you're like a zombie. You cannot converse. You cannot watch a program on TV. Can't read a book. You're literally staring into space. You can't-

Chantal Boyle:

That's the chronic fatigue syndrome.

Linda Dalton:

That's it. Absolutely. That's the major symptom of long COVID. That is the top top symptom. Your whole body is completely weak. I drop cups of teas. My hand would shake like that so suddenly. Your legs will tremor. They feel like there are 1,000 stone and weighing each leg when you move or walk. It's like you're glitching like a robot so suddenly. It's this weirdest, strangest thing I've ever had to experience, and I wouldn't wish it on anyone.

Chantal Boyle:

Have you read of any stories, any case studies where somebody has come out of the other side of long COVID?

Linda Dalton:

No. We've bad news recently, a paper issued by Dr. Bruce Patterson. He's in Stanford University in America. Anybody can look it up on YouTube. The T cells are damaged or dying. So if I'm 17 months in, any damage that's been done cannot be reversed. If you're a kid with long COVID, there is hope because of thymus gland. Your thymus gland produces fresh new T cells. If your cells are damaged, you have the opportunity to produce fresh T cells. Now obviously, if you're a long COVID kid, you're going to hell at the moment and you woke up, get back any of those years in your teenage life that you've had long COVID. Hopefully, the doctors are working around the clock to try and find a cure for this. So I have to give them, that they are.

Linda Dalton:

But for the likes of ourselves, the two-year people or the one and a half year people down the road, unless they find something to stop these T cells, and they haven't found something for HIV, just the autoimmune drug, the antiviral drugs, that will slow it down. It won't stop it, but it will slow down the damage to our T cells. So we're running out time as the years go on and there's no cure. I was hopeful at the start. My hope is getting smaller and smaller and smaller, but I'm a fighter and I will keep fighting and I will keep trying and searching.

Chantal Boyle:

I noticed you're wearing the Sunflower lanyard around you.

Linda Dalton:

Very proud, yeah. I have-

Chantal Boyle:

You got that.

Linda Dalton:

Yeah. This one, on this side, it says I have long COVID.

Chantal Boyle:

[crosstalk 00:28:04].

Linda Dalton:

Yeah. This is very important because there's still, obviously in Ireland, a lot of people that don't even know what long COVID is, so this is good for an explanation in a shop. If I'm in a shop and suddenly I'm very weak or I don't remember why I'm there. That can happen with brain fog. Or I don't remember what I was supposed to get or anything. Then for the autistic one, and I have the autistic one on this side.

Chantal Boyle:

So Linda's got two Sunflower cards in a plastic wallet back to back. So if you flip them around, one says I'm autistic and the other side says I have long COVID.

Linda Dalton:

Yeah. Sensory wise, I wouldn't be very good. So if something's very noisy, lights flicker, people talking too much at one time, if my routine doesn't go as planned, I could get very disorientated. Money, if I think something's going to add up to a certain amount and it didn't, I get quite flustered. Certain things like that. It presents its own problems. So having these cards are a godsend, and thank you so much to Hidden Disabilities for giving them to me and the lanyard. In Ireland, it's starting to become recognised as Sunflower, which is well overdue. In the place I live, we have car spaces, car parking spaces. So it's set up the blue disability for physically disability people, which they're absolutely entitled to park. They now have some for hidden disabilities. Unfortunately, we need a huge giant placard and maybe a megaphone to go outside to the government buildings, but maybe we can sort something out. You never know.

Chantal Boyle:

We'll get there.

Linda Dalton:

Yes.

Chantal Boyle:

We'll get there.

Linda Dalton:

See, people still come up and inquire and go, "What is that?" and that can start a conversation and I can explain what's wrong and what help or assistance I might need. Just even to tell them to spread the news, give them awareness that people are out there that look completely normal can have a hidden disability and you have to be very patient and supportive.

Chantal Boyle:

Why did you decide to share your story?

Linda Dalton:

I need to share my story. It's not that I decided. There's not enough news. There's not enough support. There's not enough funding. There's not enough anything in Ireland to help me and the 200,000 people now, we're reckoning, in Ireland have this. I know England have a lot more. It's 1.5 million. But when you think of the population of Ireland, we only have six million. You guys have 66, and still a lot of people. It's going to be an awful lot of pressure on the health service. We need to be heard. This is not something you can brush under the carpet. These are 200,000 people suffering and rising. Omicron is very infectious, so there's going to inevitably be more people suffering from long COVID after this. I will keep talking till someone stops me talking.

Chantal Boyle:

Do you have any advice for somebody listening today?

Linda Dalton:

You can help with your symptoms. It's not all doom and gloom. You're not alone. There's an awful lot of us out there. On the Facebook page, we've lots of tips and help and support. So if you go into Long COVID Cases Ireland Support Facebook group page, we offer a platform where you can air all your graces. If you are tired, cranky, moody, you are upset at the system, upset at not being acknowledged by the doctor, told it's in your head, anything at all, you just want to have a chat with someone privately or not privately, we are there for you. Absolutely. I'm there for you also on Instagram and Facebook.

Chantal Boyle:

Thank you so much, Linda. I didn't realise the range of symptoms. 209, did you say?

Linda Dalton:

203 and counting probably, but-

Chantal Boyle:

Yeah, [crosstalk 00:32:03] a lot of symptoms. I'm sorry that you have experienced that. In a sense, I wish we weren't having this conversation, but please do continue to fight and please keep in touch and let us know of any developments because we would really like to find out how you're doing. We wish you all the best.

Linda Dalton:

Thanks, Chantal. Thanks, [Amelia 00:32:26] for giving me the opportunity to speak. Thanks a million.

 

Speaker 4:

If you would like to share your Sunflower story or conversation with us email conversations@hiddendisabilitiesstore.com. Find out more about us or listen to this recording again by checking out our insights page at hiddendisabilitiestore.com. You can also find us on Facebook, Instagram, Twitter, YouTube and LinkedIn. Please help, have patience and show kindness to others and join us again soon. Making the invisible, visible with the Hidden Disabilities Sunflower.

 

 

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