As promised in my last post about the AIP protocol, I’ve managed to write my first recipe. Its fully AIP compliant. AIP food doesn’t have to be bland and tasteless, yes you have to cut a lot of things out that you’d normally use to give flavour, such as pepper and other spices, but there is still plenty of ways to add flavour you just have to be a bit more creative. I enjoy the challenge of creating new recipes despite the restrictions in ingredients!
Peel and roughly chop the garlic, onion and ginger. Remove the very top and tail of the lemongrass, half it width and lengthways. Leave the stem of the lemongrass in 2 large pieces but finely chop the tail of the lemongrass if you want more flavour.
Place a medium sized stock pan on a medium to high heat, add a little olive oil, then add the garlic, onion, ginger and lemongrass. Fry for a few minutes but do not let it colour.
Roughly chop the celery and courgette and add to the pan. Add a little more olive oil if necessary. Remove the stalks from the coriander, chop and add this to the pan also. Fry for a few minutes, stirring to stop the ingredients from browning.
Add enough water to cover all the ingredients. Add the bay leaf, remove the thyme leaves from the stalk and add the leaves to the pan. Let it come to a boil, then reduce the heat to a gentle simmer. Allow it to simmer until the courgette and celery become tender.
Remove the leaves of the Kale from the central stalk and roughly chop. Add this to the pan and allow it to wilt, then stir it in.
Wash the spinach, drain and then add it to the pan, again allow it to wilt down, then stir it in.
Chop the celery leaves and the coriander leaves then add to the pan. Season with a little salt and a dash of lemon juice (and pepper if you’re not following the AIP protocol). Allow it to simmer for a further minute, then remove from the heat.
At this stage the soup can be either served as it is if you wish to eat it immediately or it can be blitzed in the blender for a minute or two until completely smooth.
To garnish the dish there are various options.
You can simply drizzle with a little olive oil
Halve an avocado, remove the stone and scoop each half out with a spoon, then either slice or finely chop with a little lemon juice (to stop it going brown), you could also blitz it in the food processor if you prefer it completely smooth. Then either place on top of the soup or if you’ve blitzed it you could stir it into the soup to give a more creamy texture.
If you have some AIP compliant prosciutto fry a couple of slices in a dry frying pan until crispy then roughly crumble over the top of the soup.
If you are not following the full AIP protocol try dry frying some sunflower seeds either as they are or adding a little chilli sauce/oil or even dried chopped chillies and a little sea salt. Scatter over the soup.
If you have some AIP compliant coconut cream, you could drizzle a little over the top of the soup or stir through to give a creamier texture.
I always make at least double the amount that I need, the rest can go in the fridge or freezer to be used later. If you are going to do this though do not add the avocado until you are ready to use it or it may make the soup go a brown colour which is not as appealing as the vibrant green colour. It’s not easy eating out when on the AIP protocol so I always take stuff with me. Duncan bought me a lovely flask this Christmas as did my sister, I’d recommend investing in one if you don’t already have one or add it to your birthday or Christmas list. For me they’ve been worth it so I don’t go hungry! No one wants a hangry Helen!!
Duncan bought me this lovely chilly’s flask for christmas. I’ve used it loads already. Its great for taking organic tea out and about or hot soup. It keeps it piping hot even on the mountain at -15C. The only downside is that it doesn’t have a cup so you either need to drink straight from the flask (which is not always so easy with a nice thick soup) or you need to take a reusable cup with you.
This little flask below was a christmas gift from my sister. It doesn’t like full days on the mountain at -15C as much as the Chilly’s flask, it will happily do a couple of hours though at this kind of temperature which to be honest is more than I usually get to spend on the mountain anyway so its ideal for me. I use this a lot when travelling in the car, it’d be perfect for taking to the office. It does have advantages over the Chilly’s flask, it has a wider mouth so that you can put chunkier food in it such as stews and you can use it for cold dishes also. The lid doubles as a cup or bowl, it has a folding spoon, and a little compartment to store small snacks or garnishes such as the seeds for this recipe. It also has its own little thermal bag to store it in.
I often take both out with me if I’m out for the day, that way I get the best of both worlds, food and drink, and I don’t run the risk of going hungry or eating something that might inadvertently make me ill.
Just over 2 years ago I started the AIP protocol on the advice of my nutritionist. I was in a bad way at the time, every day was a struggle both physically and mentally, so anything was worth a shot at that point. I thought I’ll give it a month and see how it goes, never intending for it to be a long term thing.
So what is the AIP protocol?
AIP stands for the Autoimmune Paleo protocol, it is not a diet for losing weight (although I did) its a lifestyle change to improve your health. The idea is to remove all inflammatory and reactionary foods from your diet, to eat fresh produce free from additives and preservatives, in order to heal your gut and support your immune system. Once you’re gut is healed sufficiently you can then reintroduce foods one by one back into your diet and assess which if any are reactionary for you. Its important to know that reactions to foods do not just cause symptoms in your gut but throughout your body too. So you may suffer from migraines after eating certain foods, or intensely itchy skin, or notice sinus problems or it may affect you emotionally and mentally. Certain thing are not intended to be reintroduced such as additives, preservatives, processed sugars, etc as they contain no nutritional value. As well as what you eat its important to focus on the quality of what you eat also, so organic meats and vegetables wherever possible, wild fish rather than farmed.
What can you eat?
So the good news is you can eat all of the ingredients below. Seems like plenty of choice right? Now take a look at the list of ingredients you can’t eat and try not to cry!
Organ Meats/Meat/Poultry – Bone broth, Heart, Kidney, Liver, Tongue, Beef, Chicken, Lamb, Mutton, Pork, Turkey, Wild Game
Fish/Shellfish – Anchovies, Cod, Halibut, Herring, Mackerel, Salmon, Sardines, Sea Bass, Snapper, Tilipia, Trout, Tuna, Clams, Crab, Crawfish, Lobster, Mussels, Octopus, Oysters, Prawns, Scallops, Shrimp, Squid. This list is by no means exhaustive, most fish or shellfish is good but try and steer clear of farmed fish wherever possible.
Natural Sugars – Blackstrap, Coconut, Honey, Maple (natural only), Molasses. Limit your intake of these, they should only be usedoccasionally and in small quantities.
What can’t you eat?
When I first saw this list I thought this is impossible, there is nothing left to eat! I found it best to concentrate on the list of foods you could eat and start coming up with recipes, rather than dwelling on what I could no longer have.
Nuts/Seeds – Almonds, Brazil nuts, Cashews, Chestnuts, Flax seeds, Hazelnuts, Hemp seeds, Macadamia nuts, Pecans, Pine nuts, Pistachios, Poppy seeds, Pumpkin seeds, Sesame seeds, Sunflower seeds, Walnuts. Any flours, butters, oils or other products derived from nuts or seeds.
Nightshades/Spices derived from Nightshades – Ashwagandha, Aubergine (eggplant), Bell peppers (sweet peppers), Cayenne peppers, Cape Gooseberries (physalis), Garden huckleberries (regular huckleberries are ok), Goji berries, Hot peppers (chili peppers & chili-based spices), Naranjillas, Paprika, Pepinos, Pimentos, Potatoes (not sweet potatoes, which are ok), Tamarillos, Tomatillos, Tomatoes. Some curry powders contain nightshades so please check them.
Spices derived from Seeds – Anise, Annatto, Black Caraway (russian caraway, black cumin), Celery seed, Coriander seed, Cumin, Dill, Fennel seed, Fenugreek, Mustard, Nutmeg. Celery leaf, Coriander leaf, Dill fronds, Fennel fronds, Mustard greens are all ok.
How hard could it be?
Lets face it, it was only going to be for a month I could cope, I was already coeliac so how hard could it be! Well it turns out it could be pretty hard. The first 2 weeks I had such bad cravings for sugary foods it was unreal, I didn’t eat that much sugar in the first place so why were the cravings so bad?! It wasn’t until trying the AIP protocol that I realised how many foods sugar is hidden in. You think sugar, you think cakes, sweets, desserts, etc, you don’t necessarily think stock cubes, sauces, bacon, sausages, cured meats, bread, etc. But sure enough its there! I was constantly hungry thanks to the cravings, even though I was now eating twice as much as before. I was contemplating giving up at this point, and then I started to notice a few things. For the first time in over 20 years I was starting to sleep more regularly, after suffering from pretty bad insomnia where some nights I barely got an hours sleep, and I rarely slept before 4am I suddenly wanted to go to bed before Duncan and I could actually go to sleep pretty much as soon as my head hit the pillow, this was a revelation for me!! As a result I started to find I had a little more energy than before. By the end of the first month my digestive problems had started to improve, I didn’t have debilitating cramps and bouts of unexplained diarrhoea (sorry TMI) constantly. So rather than giving up at the end of the first month I decided I’d give it another month. This pattern continued for the next few months, I slept better and better, I felt more energised than I had in years as a result I could think more clearly, my daily digestive issues pretty much disappeared, my emotional state was vastly improved. I added in digestive enzymes and probiotics to help my gut, I added in Omega 3s to help with inflammation and I changed some of my existing supplements to better quality ones, with no nasty fillers. I’d already been taking vitamin D topically as taking it orally had had no effect for over 2 years, despite dosage increases, my nutritionist advised increasing it even more as studies have shown improvements for those with autoimmune disease who are able to have an optimal Vitamin D level.
It wasn’t perfect by any means and I was nowhere near back to normal but it was a huge improvement and at a level I felt I could manage, rather than feeling like I was barely existing.
At about the 5 – 6 month mark I started to think about re-introducing foods. I started off slow, with one ingredient at a time. Some people follow a set order others prefer to try things they miss the most first. I must admit I did a little of both. Some of the first things I tried are chocolate ( I was still missing the convenience of sweet things at this point), pepper, rice, egg yolks (I already knew that egg whites were a problem for me prior to the AIP protocol), potatoes, spices, seeds, nuts. Chocolate was a definite no unfortunately, as were egg yolks. For awhile I thought pepper was also a problem but it turned out I’d been making truffles and AIP cereal bars using carob instead of chocolate and it just happened to be on these days I’d had pepper also. I’d never eaten carob before and assumed because it wasn’t on the no foods list it wouldn’t be a problem, how wrong I was, the stomach cramps were horrendous to the point of feeling like I was going to pass out, hot and cold sweats, it was nearly on a par with a coeliac reaction for me. Once I figured this out and stopped eating carob, it became obvious that pepper had never been the problem. Its good to note that even if a food is on the “yes” list, if you’ve never eaten it before, don’t just start eating loads of it, try a little first! Spices and seeds turned out to be fine, which opened back up a whole load of flavours and recipes for me. Potatoes no problem and rice, or so I thought. Shortly after reintroducing these I started to feel unwell and ended up with food poisoning at which point my nutritionist ordered a whole load of tests for bacterial levels in my gut, parasites, infections, antibody levels, etc. Not only did they show that I had food poisoning but that my Gliadin antibodies were elevated. Now I definitely hadn’t eaten any gluten as I’m very strict with this because my reactions are so severe. So my gliadin antibodies should definitely not have been elevated. We took a look at what I’d eaten as there are certain foods that do not contain gluten that can trigger a reaction as the protein structures are similar enough that your immune system often recognises it as gluten and reacts accordingly. There are 6 such foods, dairy, oats, corn, millet, rice and yeast. I’d already discovered I couldn’t tolerate oats a couple of years previous, so the only other food that I had eaten that was on the list was rice. To say I was gutted about this was an understatement, I love rice, its such an easy replacement for those of us who are gluten free, I used to eat a lot of it. No wonder I felt like shit constantly, if my body was recognising rice as gluten! I was even more gutted about this than chocolate believe it or not!! After this I eased off the reintroduction for awhile to let my system recover again. By the end of month 9 I no longer needed the digestive enzymes, I was only taking one probiotic, I’d successfully reintroduced all nightshades. Which made life so much easier being able to eat tomatoes, potatoes, chillies, peppercorn, aubergine, peppers, etc. Since then I’ve slowly reintroduced other things, but I’ve been cautious about when I’ll try new stuff, it can’t be when I’m working as I can’t risk a major reaction when I’m self employed. I don’t think its a bad thing having taken it so slowly as its given me a chance to fully assess each new item without the temptation to keep trying something every few days and then be confused as to what is causing a particular reaction.
Yes alcohol gets its own section! Other than sugar this is probably the hardest thing to give up. And maybe thats because it contains so much sugar anyway. I didn’t miss this instantly unlike the sugar, as I a rarely drank at home anyway. Initially I did miss it when going to friends for dinner, but now that doesn’t even register for me. But the times I missed it the most were going to something that had a large amount of people, such as a bbq, party or to the pub. I’m not sure now if it was actually the alcohol itself I missed or the fact that it helped me take the edge off of the sensory overload of these situations, such as the noises, smells, heat, etc. I tried on several occasions to reintroduce different alcohols as I thought maybe its just the beer or the wine, maybe spirits will be fine. Wine definitely had a very visible affect as well as an emotional toll, after about a year of no alcohol with only having tried a gf beer once or twice with no success, I went to a wine tasting. I was very strict and only tasted and spat the rest. Nevertheless, I woke up the next day feeling like shit, my sinuses were so painful it felt like I’d been punched in the face, to my horror my husband confirmed that it also looked like I’d been punched as all around my nose and eyes were swollen! This pain lasted 10 days and throughout that whole time I was very fatigued and felt very low emotionally. Ok so wine was a definite no, maybe it was the histamines, maybe it was the sugar but either way I wasn’t interested in giving it another go. So that was beer ruled out because of the potential cross reaction with the grains, wine because of the intense sinus reaction. Maybe spirits would be ok, as long as I used a mixer with only natural sugars. On a couple of different occasions I tried a gin & tonic, initially with just a normal schweppes tonic and then with fevertree tonic with just fruit sugars, the second was definitely better than the first but I suddenly realised something that I hadn’t before, whilst none of the alcohol I’d tried to reintroduce had caused any digestive symptoms, for at least a week after each trial I’d had a severe mood drop each time. And I’m not talking about feeling a little low, but actually verging on feeling suicidal, switching from uncontrollable crying to having absolutely no interest in anything, being completely disassociated from everything and everyone. This scared me and at this point I decided drinking was not worth it for me. I didn’t ever want to feel like that again. It then dawned on me that throughout my years of illness, this was a constant feeling I’d battled. Which isn’t uncommon with those suffering from chronic autoimmune illnesses, but if alcohol was a trigger for this side of my autoimmune illnesses then I needed to put it firmly on the “No” list. Now it rarely bothers me when I go out that I’m not drinking, even in noisy situations. It tends to bother others more than it bothers me, a lot of people can’t understand that you’d choose not to drink. But then again if you’d have told me 2 years ago that I’d have chosen not to drink, I’d have laughed my ass off too!
Whats the Verdict?
For me the AIP protocol has been a life changer. So I’d definitely say its worth it. But maybe not for everyone, as its pretty extreme. I’d definitely advise anyone who has autoimmune conditions, chronic illnesses, digestive problems, allergies or mental health problems to seriously consider it. Maybe those who don’t suffer from any of these, but want to lead a healthier lifestyle might consider the Paleo protocol which is less limiting but still very healthy and nutrient dense. The key in all of it for me is to avoid those things that have no nutritional benefit, and to focus on those that are rich in nutrients.
Want to try AIP?
My advise for anyone who decides to try the Autoimmune Paleo Protocol is to plan, plan & plan before you even start. So first pick a date to start, don’t just think I’ll start it tomorrow or on Monday because chances are something will crop up and you’ll postpone it. As I turned 40 I had a busy couple of months, with holidays booked, meals and parties lined up with set menus that I’d already committed to, so I picked 2 days after the last event I had planned, obviously I’d need a recovery day after the annual girls night out! From the day you decide to try the AIP protocol to the day you actually start, familiarise yourself with the foods you can and can’t have, research recipes, write a meal plan for at least a month and write your shopping lists. Make sure the house is well stocked with items that are on the “yes” list and prepare meals and snacks in advance. Don’t leave the house without a snack if you’re going to be out for a few hours, as you’ll find it nigh on impossible to find anything suitable in the shops! A great place to find AIP recipes is pinterest, if you want further information on the paleo or the AIP protocol head over to thepaleomom this site was recommended to me by my nutritionist and I found it absolutely invaluable. Once you’ve started the protocol, stick with it, its definitely worth the initial pain. Don’t be tempted to re-introduce things too soon or too quickly, leave at least a week between introducing each item so you can be sure what you’re reacting to if you do have a reaction. The hunger and the cravings for the sweet things do pass in fact you’ll find your tastebuds change after awhile and if you do inadvertently have something that has sugar in it several months down the line you’ll know instantly and find it sickly sweet!
Over the next few months I hope to add some recipes of my own to help those of you who are just starting out. If you want to share any of your recipes with me please do!
For me this is a constant battle to balance the two!
Hope that my illness will improve, that the latest medication will work, that the latest diagnosis will be the key to finally finding out whats causing my immune system to go haywire. Hope that the latest specialist I’m referred to will actually know something about my illness other than the basics, that they’ll actually listen and take into account symptoms not just test results. Hope that they’ll agree to trial different treatment options if the current one isn’t working, if you’ve researched a treatment that they are unaware of that they’ll be open to it, it happens frequently that they won’t as many doctors are at least 17 years behind the latest treatment curve.
Fear that my illness is never going to get any better, that it will continue to get worse as it has done over the past few years, fear that the latest diagnosis will just complicate things and is just another sign of my rapidly deteriorating health, fear that the latest medication won’t work, or that the side effects will be so severe that it negates taking it in the first place. Fear that you’ll have no choice but to take the medication with horrendous side effects, despite the side effects often being worse than the initial illness itself. Fear that the latest medication/supplement/lifestyle change will be labelled as a placebo/nocebo by the medical profession. Fear that a medication that seems to be working will be changed or no longer be available or will be stopped by a doctor despite my protestations.
The lists seem endless some days and whilst some may seem extreme I have experienced all of the above at one time or another throughout my illness.
We’re repeatedly warned about how damaging negative thoughts can be and that we should try and be as positive as we can, but hope can be just as dangerous I’ve found.
So it is important to be pragmatic when starting a new treatment or seeing a new doctor for the first time. For any new treatment I carefully log each day how I’m feeling whilst taking it, so that I can objectively look at all the data and see if symptoms are improving or getting worse, are there any new symptoms, I also log test results, and any things I may have eaten or come in to contact with. Such as the paint fumes during my recent re-decoration of our lounge, I thought my thyroid was rapidly descending into a hyper state, due to the horrendous chest pains, the breathlessness, headaches, etc. As soon as the paint was dry and the fumes gone all of this started to clear up, although it has taken a couple of weeks. Logging all of this data is useful for taking with me to my doctors visit, I rarely visit the doctors without having researched and bullet pointed everything I want to cover as I’ve found if I don’t not only do I forget half of it (thanks brain fog), but its easier for it be ignored when its not all laid out in black and white. I’ve learnt this the hard way unfortunately! And I’m sure my doctor must dread the site of me sometimes with my notes, graphs and books, but it has helped me achieve dosage changes, medication changes and trialling of new medications, so although its a lot of work at the time I definitely wouldn’t change it.
My latest dealings with hope and fear has been thanks to a new medication. It took some convincing for my doctor to agree to prescribe my latest medication, low dose naltrexone (LDN) as its not licensed to treat autoimmune diseases but has been found both anecdotally and in plenty of small studies to be an effective treatment as it was discovered to be an immunomodulator in the 1980’s . As the alternative he was offering was not licensed either for any of my autoimmune illnesses and has a list a mile long of pretty horrendous side effects and only treated the pain and not the immune disfunction which is what this does, and has very little side effects, he finally agreed to trial it first. It has been 6 weeks since I started taking LDN and apart from a few bumps in the road early on it seems to be helping. I say bumps in the road, but they felt like a little more than that at the time! I started to notice a difference within the first day or two but was cautious not to be too optimistic, by the end of the first week the muscle pain, muscle weakness, fatigue and brain fog were noticeably improved. I had more energy and motivation, I could think clearly for the first time in ages and actually do physical stuff without wanting to cry from the pain. This was then followed by two days of feeling like I was an emotional mess, crying for no reason, feeling so low everything seemed pointless. Probably the fall out from overdoing it because I was feeling better than normal and doing more than normal as a consequence. I’d been so careful not to get my hopes up, but it had happened anyway! Thankfully this passed quickly but was then followed by an unexplained sudden severe bought of diarrhoea and sickness (sorry TMI!), to the point I had to delay my travel plans to visit my sister in Marseille. Luckily since then its been fairly good, I’m having to find my new level of what I can and can’t do as I now feel and want to do more, but thats a good thing! I’ve just started to increase my dose little by little to find my ideal dosage, so hopefully there won’t be any further problems but you never know, at least I’ve researched what the likeliest problems could be and am actively monitoring everything.
So far in the last month I’ve managed a trip to Marseille on my own, which might not seem like anything major but travel usually exhausts me, so I try to only travel with others so they can help me out if I hit the wall halfway through! I’ve been on plenty of dog walks, more DIY (it never ends), deep cleaning the house (with a little help, thanks Michelle). And loads of social events, such as my birthday dinner, a halloween party (I even had the energy to make my costume), bonfire night, fake christmas dinner with 15 people, a friends birthday bash, and book club, any one of which would normally put me out of action for days afterwards but apart from some extra aches and pains its been pretty good. Plus a two day first aid course all in French which I organised too, which is a major achievement as the brain fog can make it really hard to speak or understand English most days. Long may it continue!!!
Hope is the only thing that keeps me going some days, but I try not to build it so high that the crash if and when it comes isn’t so crushing. When this does happen and fear takes hold completely, I rely on my friends and family to help drag me out of the funk that usually accompanies it and to help me re-balance the two. Thanks for all the visits, calls and messages when I’ve been feeling rough and for all the fun when I haven’t!
I’ve done a lot over the past few weeks, well for me it’s a lot. I’ve redecorated our lounge, I’ve organised a first aid course (with a little help from my friends), I’ve been on several decent dog walks, I’ve joined a book club, I went wine tasting, or just sniffing for me due to no longer being able to drink alcohol! I’ve applied for my French driving license, been to the doctors (which is a whole other post on its own!), I’ve been over to the new neighbours for welcome drinks, organised various appointments and deliveries in french and on the phone (which I really find difficult) and these are just a handful of things I’ve achieved over the past few weeks.
Today as a result I’m shattered, so after I finally got out of bed, I’ve mainly sat in the sun in our garden and cuddled our dogs on the sofa. It feels lazy and at one point I would have really struggled with the guilt and frustration of not being able to do more. I’m not saying that I never feel that way anymore, because if the fatigue lasts for days and days and I start to feel like it’s never going to end I still feel guilty and frustrated. I don’t have a great deal of patience at the best of times but this can really test it.
I am however better at realising when I need a day off and when I need to do absolutely nowt! And that’s progress!!
If I listen to my body and take that day or two or three off from everything the fatigue often passes quicker and I can achieve more in the long run. I’m also much more pleasant to live with as my tolerance levels plummet and irritability levels go through the roof when I’m fatigued!
Its not always possible to take that time though, sometimes work and other commitments can’t be ignored and you have to push on. These are the times I find the hardest, as I know whats likely to happen to my health as a result but I can’t do anything to change it. And when that flare finally hits and I’m sat doing nothing waiting for it to pass, knowing I’ve got a mountain of things to do and it drags into days and sometimes weeks like this, I really start to despair that its never going to end. Thats when I try to look around at the things I have achieved and it makes me determined that this illness is not going to beat me.
So don’t feel guilty for taking time out, be kind to yourself and try to enjoy a little downtime in whichever way you can, for me it’s doggy cuddles, sunshine and a good book if I’m not too tired to concentrate.
It’s hard, it shouldn’t be but it is. In fact it’s something I fucking hate doing!
I’ve always been fiercely independent. Annoyingly so! I can do it myself was almost a mantra. It’s a habit that I’ve found incredibly hard to break, in fact until today I don’t remember the last time I asked someone to help me.
It was actually the response I received from my first blog post that pushed me to ask. I received so many supportive messages and not just from my close circle of friends and family, that it made me realise that there’s a whole load of people ready to help if only I’d ask. In fact quite a few would be annoyed to find out that I needed help and didn’t ask. How do I know that? Because I’d be annoyed to find out if a friend needed help but was afraid or too stubborn to ask.
Why would you be afraid to ask a friend for help? Well when the mental fog and anxiety descend like they did for me suddenly yesterday, it’s not always easy to think rationally.
Knowing all this why did I still find it so hard! One answer for me comes back to the independence and not wanting to feel like a burden. Ridiculous I know, but constructing the message to ask must have taken me 20 minutes plus the deliberation time to actually press send.
So what was I asking for? A kidney? Or a huge loan? No. I was asking if they’d be able to come to a meeting with me, as I didn’t want to go on my own because of the brain fog affecting the speed of my thought and speech process.
Even writing this I can feel the anxiety rising, my heart rate is rising, I feel hot and nauseous and slightly panicky. Why? The thought of my friends reading this and them knowing what a state I got myself into just to ask a favour is slightly mortifying. Despite all that I’m glad I asked, even if it felt like admitting defeat.
How do you explain fatigue to someone who has never dealt with a chronic illness?
When you first tell someone you have a chronic illness its difficult to explain the extent of how fatigue affects you. Its not just feeling tired. I find that most people get the side of fatigue that prevents you from doing certain physical activities, such as cycling, skiing, playing football, martial arts, etc. But what is more difficult for non chronic illness sufferers to understand, or rather for me to explain clearly, is how it affects us in our day to day life, such as not only can I not play the sports I used to play but that some days walking my dogs, showering, climbing the stairs, or even preparing my food is way beyond what I can manage. But again these are purely physical affects of fatigue, its the mental side of fatigue that is beyond most peoples comprehension or my power of explanation! So, frequently I don’t even bother trying to explain as you don’t want people to think you’re whining again or that its all you ever talk about, but how can you complain no-one understands if you don’t even try to explain. So here goes! Most people don’t realise that it takes energy to think, to speak, to coordinate your limbs when you walk or try to write or type as these are all things most people do automatically without having to think about it all. The more fatigue I feel the harder these things become. When fatigue really kicks in for me I often start to slur when I speak, stagger as I walk which whilst is amusing at times as I often appear to be drunk its also extremely frustrating to not be able to communicate or move as clearly or as quickly as you’d like. I’m extremely conscious of how this often comes across, I can feel how slow I am mentally, especially compared to how I was before, and assume this is picked up by others, I’m frequently assured its not noticeable but it doesn’t stop me feeling so self-conscious! This in turn or at least for me leads me to be withdrawn and quiet in social situations, so when I’m feeling at my worst I’ll often avoid social situations, which in turn can make me feel quite isolated. Even writing this now with plenty of time to think I still find it difficult to articulate how deeply fatigue affects me!
For me on my worst days I can barely leave my bed, for most people I know this is difficult for them to comprehend as they obviously never see me on my worst days and they don’t see the struggle it is to perform the most basic tasks.
The more fatigued I become the more irritable, short tempered and bitchy I become, this affects my mental health drastically and often leads to depression, anxiety and a definite lack of self worth. When you can’t do any of the fun things you used to do, when you can’t socialise comfortably, when working becomes too much you really start to lose any sense of who you are. Most days I don’t even recognise the person I am now in comparison to who I was before! Fun loving, sporty, party animal, where’d she go?! And who the health is this boring bitch that took her place!!!
Learning to manage fatigue levels has been one of the hardest parts of adapting to my illness, accepting that I can no longer do certain things, that I have to learn to say no to people or events as its impossible for me to do everything I could before and that I have to pace myself if I want to be able to do anything at all. The consequences of ignoring my body when it says enough are high, my illness flares and can take weeks or even months to return to anywhere near what it was before, not to mention the damage that is done to your body during the flare and the fact that some of this damage may not be repairable. The downside of saying no to people so frequently is that after a while they stop asking. Which is normal as who wants to keep asking someone out who rarely commits to anything! It does however add to the vicious circle of isolation and feelings of a lack of self worth.
I don’t have any magic answers as to how to overcome the loneliness fatigue can cause but I can say that being patient with yourself, learning how to manage your fatigue to avoid huge highs and lows, not overdoing it on your good days (and yes I know this is extremely difficult and some times an event may be worth the pain and fatigue), all help keep me on a little more of an even keel!
Feel free to share any hints or tips you may have for how you manage your fatigue and the isolation. For me a little yoga (when I can manage it), a gentle dog walk, meditating and reading as well as laying in my hammock when the gardens not covered in snow and dog cuddles when it is, all these things help me feel a little brighter and more balanced.