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Covid Then…Covid Now

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It is 3 years and 4 months since I first contracted Covid in October 2020. I was the first person in my family and friend groups and the only person I knew personally to have it, it was scary but I was the fittest I’d ever been and felt like if I was going to get it I was in the best shape to fight it. I expected to feel rotten for a week or two and then be glad it was done with and I’d be immune for a while. That was not the case. In January 2021 I was diagnosed with Long Covid and began experiencing the symptoms I still deal with daily today. I’ve had three further infections of covid since that time and with the third in June 2022 my symptoms worsened extremely quickly and they affect my daily life in so many ways. I am in pain every day at a level which although I am now used to is incredibly exhausting, I have become a master at masking my pain but it is there and it is constant. Some days are far worse than others of course. Here are a few of the symptoms which I deal with each day:

* Significant joint pain, particularly in my legs and feet. As someone who loved to walk up to 25k steps a day this has been a hard pill to swallow.

* Dysfunctional breathing. I have too much carbon dioxide in my blood and I have shortness of breath frequently.

* Heart rate issues. I have a much faster heart rate and irregular beats and palpitations.

* Fatigue. Now fatigue doesn’t mean you feel sleepy, fatigue is like walking through wet sand every day. I am never not tired on a level which I’ve only ever experienced on the worst days of very early pregnancy.

* Brain fog and concentration issues. I was an avid reader and writer pre covid. Now some days I find it hard to find the simplest of words and I have alarms for everything I need to remember.

* Neuropathy and hyperesthesia. Two big words which basically mean I have hyper sensitive skin, my skin can feel like it has sunburn or be sensitive to the lightest touch as well as pins and needles or crawling sensation and numbness.

* PEM or post exertional malaise – is the crash that occurs anytime I do too much of anything. Perhaps one day I feel a bit better and so I give the house a good sort out or I try to take my kids out somewhere, I may feel the effects of that exertion for a week or two and it causes a relapse in all of my symptoms. Some days that crash occurs whilst doing said activity like shopping, I feel like my battery goes from 50% to zero in a second.

* Digestive problems – stomach issues are common post covid and for many the use of anti inflammatory medication used to help with joint issues causes additional damage. I have severe acid reflux now which I’ve never experienced before and a sliding hiatal hernia which causes significant pain. Doctors believe gut issues are due to the fact that the stomach lining has a large amount of the receptors that the virus uses to invade cells.

* Histamine intolerance. Histamines are the cause of the acute inflammatory and hypersensitivity responses in Long Covid. It may mean you develop allergies or repeatedly get hives or rashes. I get very sore hands and as soon as the weather gets a little warmer they get a lot more painful with bumps and blisters.

* Hair loss and skin changes. I’ve experienced significant hair loss since having Covid. Luckily I have very thick hair and a lot of it otherwise it would be very visible.

There are more but I don’t want to bore you.

I am writing this whilst at the end of my 4th infection in January 2024. This time around felt very similar to the first, it is an incredibly nasty strain. Early symptoms included : incredible body aches, a high persistent temperature, very sore throat and a pounding headache. I am worried because I know it’s very likely that my LC symptoms will worsen. The latest LC studies show that of those who still had LC at the time of reinfection 80% saw their symptoms worsen, around 85% saw old symptoms return or new additional symptoms. In the 60% of people who were in recovery or remission, reinfection caused a recurrence of LC.

And to be honest this is why I’m writing this now. A lot of people think Covid isn’t important anymore, that there is no point in testing and no point in isolating. But it is important, in fact avoiding covid is crucial to people like me. It is also important that I know when I have it so that my doctors and I have an understanding of why my illness is getting worse and to take relevant medications or supplements to boost me at this time. It’s impossible to shield completely but you can protect people like me by testing yourself and staying away. Ignorance is bliss I know and I’ve had many a debate even with people in my own family who know love me and see everything I go through with this illness. Continuing to get Covid is damaging to me, it impacts my future health and my ability to be a present and active parent and in some cases it will still kill people. And it’s not just people with LC, anyone with immunity issues, heart or respiratory conditions or anyone currently receiving treatment such as chemotherapy could be severely affected by being infected. Also I’m sure most of us know someone who works in a hospital environment, if you pass it on to them it could be causing such problems for the patients they deal with. I can’t tell you what to do but I will urge you to think more, if you had norovirus ( the vomiting and diarrhoea bug) you wouldn’t think twice about spending time with other people, you’d stay away as it’s highly contagious and could make certain people very unwell, the same goes for Covid. For me and for every other person who this affects I urge you to think about the consequences and be considerate.

Photo by Annie Spratt on Unsplash

We don’t talk about (Long) Covid no no…

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There are a lot of people who would prefer not to hear the word COVID again which I understand. It is the only thing to have happened in my lifetime at least which impacted every person regardless of wealth or location. We all felt the loneliness COVID brought into our lives, we all suffered in different ways. Many lost people they loved and others lost businesses, then you had the incredible impact on the mental health of those who went through a pandemic alone. It destroyed lives in so many ways that people don’t want to hear about it anymore but where does that leave those left with long COVID?

You even still have people who believe COVID wasn’t real and yet if that is the case why am I and millions of others now left with disabling symptoms which have forever changed our day to day lives?

As much as I along with everyone else would like to forget that period of time I cannot.

My life has changed immensely over the three years since I first contracted COVID in October 2020. I was the fittest I’d been in a very long time when I tested positive and I remember thinking well this is the best time for me to get this virus, I’ll fight it and then I’ll be immune to it for a while and get on with life. I was almost glad to get it out of the way because surely I’d be fine. That wasn’t the case and it’s now clear that the people affected with LC still, were for the majority very fit before infection, it also seems to affect women from 30-50 more than any other age group. We still don’t know why. I just know I went from going to the gym 3-5 times a week and walking up to 25k steps per day to being breathless walking to the end of the street. To learning to live with constant pain, fatigue and unbelievable brain fog. Then the scarier symptoms appeared like fast heart rate, palpitations and shortness of breath. I’ve had COVID three times and with each reinfection I’ve had more and more issues. It has’t gone away, it was a big deal and more needs to be done to support those still suffering. We need more research, more treatments available ( and not just for those who can afford private healthcare) and for there to be options other than this is now your life.

As I’ve said before if you know someone with Long Covid please support them as much as you can, please don’t belittle their condition. It does not mean just being tired or a little breathless, it is a disabling illness and for some it gets worse not better. I have written quite a bit about this subject so if you want to learn more please click here and if you want to get in touch please do, ask questions, get support and educate yourself. Coming up soon I’ll be sharing more about what I do daily to help manage my pain and symptoms.

Guilt

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This is something that’s been on my mind for a long time. We all know that as parents parental guilt is something we all feel from time to time. For me though lately it seems to creep into every day. I hit a point last week where I just had a bit of a culmination of all of the feels and I spent the majority of the day in tears.

We’ve all had times where we feel we aren’t doing enough as parents, not doing enough activities, not taking your children to enough fun places or sometimes just not being present enough. For me being a mother is the most important role in my life, I am there for my children whenever they need me, whether that is for help with schoolwork or fun stuff or to talk about any problems they have. I know this, I know in my heart that I am doing everything and probably more than I am actually capable of at this time. But to me it’s still not enough. I am not well and haven’t been for the best part of two years but the last 12 months my physical symptoms have exacerbated to a point where most days I have physical limitations on what I can do. I have gone from being someone who walks 20,000 steps daily and is a regular gym goer to someone who really struggles on days with the school run. I can’t chase my kids around like I used to or go and do fun activities like climbing walls and trampoline parks. Does this mean I am trying less? No. Do they blame me for this? Also no. My children who are wonderfully kind and empathetic totally understand my limitations. And there for me that is the problem. I don’t want them to get it. I don’t want them to say mam don’t do that you are too tired or when will your long covid go? Or spotting my grimace when I stand or walk even when I try so hard to pretend I am fine.

Life is hard, we all know this but childhood should be free and full of joy. I try my hardest to make my children’s lives as happy and wondrous as it can be. But this, this is the hardest part of parenting I have ever done.

I know I am a good mother. I support my girls emotions. I am there for them every step of the way as they navigate growing up. I need to stop putting this stupid amount of pressure on myself to be perfect, to be what I cannot be in this moment.

I am doing everything in my power to get better, yet I may not, get better that is. I may be like this for the rest of my life or it could get worse. I am still hopeful that something will change, I cannot and will not give into it.

I hope that my girls know when they are older how hard I tried for them and look back and remember a happy and loving home in spite of this illness. I hope it doesn’t define any part of their childhood and I hope they never blame me for this.

I hope that one day this burden of guilt gets lighter. I hope I learn to give myself a break. For now writing this has helped, I know others will feel the same and I hope reading this helps you know you are not alone.

I will fight for my health harder for the ones that I love than I would purely for myself. I have to be better, for them. Not just my children but for my partner who supports me and deserves more and for my parents who I know worry about me and that is unfair.

I hope this hasn’t read as a pity party because it’s not. I know the way I speak to myself in my head is important and getting these feelings out will help me move on. I am enough, even when I am not. And so are you.

Turning 40

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I turn 40 in less than two months. 40. That age that when I was a child seemed like old age yet now feels like I blinked after turning 25 and here I am. I’m not worried about turning 40, it doesn’t feel like a huge change yet it is. 40 is very different to being IN your 30’s. It feels like a different statement is made when you say I’m 40 as to when you say you are late 30’s especially as a woman.

Women of my generation are lucky in that in most cases women are now getting celebrated at all ages. We see stories every day of women who started careers at 40 or 50, female actors winning awards and sometimes even not choosing to start families until they are my age. 40 is not over the hill by any means but it just feels different.

I think for me the biggest issue I have with it is that I don’t feel healthy or well and the older I get the more that seems like it may be something I can’t change. I am doing everything I can to better myself and get well but a lot of it is out of my control. I imagined having big parties and weeks of celebrations for my 40th but I can’t think of many things right now which wouldn’t cost me too much physically to do. I know my family, my friends and my partner will want to make it a big deal for me and I appreciate that in so many ways yet the thought of it alone is tiring.

In lockdown I had a few things I knew I wanted to achieve before my 40th, then I caught covid in October 2020 and quite honestly nothing has been the same since. I wasn’t hospitalised, thankfully I didn’t die ( obviously) but my life has been significantly impacted by a virus which honestly when I caught it I thought oh great I can get this out of the way now and thank goodness I am at the best fitness I’ve been in for a long time so I can beat it. Um no covid doesn’t work like that and long covid sufferers are more than likely to be women of my age who were previously fit. I’ve had to adapt my life and there are some goals which I’ve had to put on the back burner maybe forever.

I am determined that this next year will see an improvement in some way in my health. I am determined to make my life better for my girls and my partner and my family. It will not be easy but I will do it. Not sure how exactly but I will. For now I am going to look to my 40th and find a way to share that time and celebrate it with the ones I love.

I bet you missed my rambles? More to come I’m sure…

Ways To Manage Chronic Pain

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Not a post I ever thought I’d have to write but having suffered with chronic pain for the last two years I thought some of the little tips I have picked up may be of use to someone.

Long COVID (link will lead you to my latest update ) is very real and for many sufferers chronic pain has become the norm. For me my pain is mostly in my legs, it does spread to other parts such as my back and arms some days but every day I have significant pain in my legs and feet. I am on a very long waiting list to be seen by the pain management clinic and also the neurology department as most of my symptoms point towards nerve damage. I am unfortunately unable to take anti inflammatory medication and a lot of the common pain relieving tablets and nerve pain tablets. This is in itself incredibly frustrating as the only actual medication I currently take is paracetamol which as you can imagine barely touches the pain I am in. Because of this I have had to find other ways to help manage my pain, none of the things I do take the pain away but it helps to stop it becoming unbearable some days.

Here is a little list of my pain tools:

1. Heat. Heat helps my pain levels and is probably my most used form of pain relief. I have a heated electric underblanket on my bed. Heated throws on my sofa, a heat and massage pad, long water bottles and when out and about I sometimes use the sticky heat pads ( these aren’t always useful as my pain is over such a large area). Obviously these aren’t cheap and also the majority of them use an electric power source which as we know is expensive these days.

2. Water. The only time I get real relief for a period of time is when I am fully submerged in the bath. Being able to soak in the hot tub is also beneficial but a rarity these days as they cost so much to power and heat.

3. Magnesium sprays. The best way to absorb magnesium is through your skin so I buy a spray from Amazon and spray on my legs when the pain is severe. It does give an uncomfortable tingling sensation and unfortunately this can interrupt my sleep at times and definitely do not recommend using straight after shaving your legs!

4. Capsaicin cream. I get this on prescription from my GP. Recently it has been hard to source in the strength I need it due to national shortages. The cream is made from chillier and is quite burny to say the least. Also don’t forget to wash it off before a soak in the bath as it can be incredibly painful when added to hot water.

5. Clothing. Weirdly clothing has a big impact on my pain, I get extreme skin sensitivity and often tight gym style leggings are the best option as anything loose rubbing on my skin feels like it’s touching sunburn. Other days then I cannot tolerate the tightness on my legs so I wear bamboo pyjamas as it is the best fabric against my skin. Jeans are mostly a no go.

6. Massage or vibration. I have a heat and massage pad and also a vibro plate. Some days this helps enormously other days the pain is too much to tolerate the vibration.

7. A decent mattress. I have had to invest in a bamboo mattress topper, a new mattress was a bit outside my stretch financially but this mattress topper means I feel less pressure on my joints and is helping with my sleep too as lots of pain means you get very very tired.

8. Rest. Long COVID is one of the only illnesses where you are not advised to push yourself a little more each today to get fitter and healthier. In fact it will 9 times out of 10 make you feel worse. You have to rest but when in pain rest is difficult so this one is a bit of a battle.

9. Support. You need support from family and friends when you are in constant high levels of pain. My family are amazing and help with school runs and food shopping and I wouldn’t cope without them.

10. Taking care of mental health. Chronic pain can cause huge issues with mental health, feeling like you have no way out or no signs of improvement can make you feel incredibly low so you need to find your coping mechanisms and speak to your doctor to manage this.

11. With a growing number of individuals seeking alternative pain management options, medical cannabis has emerged as a popular alternative. According to research medical cannabis could potentially help manage chronic pain. If you’re looking to explore the possible advantages of medical cannabis and discover more about its applications you might find the Alternaleaf website to be a useful resource.

Do you have any tips for dealing with chronic pain? I’d love to hear any that you have and if any one needs advice or a chat about long COVID feel free to comment or drop me an email.