Recovering from chronic illness was due to a massive overturn of my life over the course of two years. My whole attitude to every single element of my life was forced to change in order to help my health. It was a gradual learning curve and there were enormous setbacks. I want to stress before you read this that this is not and will not be a cure for everyone, I haven’t had the hardest battle with chronic illness, I realise that but nonetheless it was not easy. In fact, it is the hardest thing I’ve ever done, I hope it’s the hardest thing I ever will do. But this is what I did and it worked, I tried loads but I have only provided links to the things that were most beneficial for me, I hope you can take from it what you can and it can work for you too.
Organisation, Cognitive Behavioural Therapy (CBT) and learning to give less of a crap.
First off and the most important part of the illness is organisation. This does not come naturally to me, I’m known for being late to everything and I must spend a minimum of 30 minutes a day finding and losing items over and over again. However now with my health that wasn’t good enough, if I misplaced a packet of pills or forgot to put my bottle of water in my bag, it’s not a little frustrating, it was dangerous. I needed to plan every single potential scenario and always prepare for the worst in case it occurred. Examples included needing to have food, water, and medication on you at all times, always having clothes that can be both hot and cold when needs if a fever occurs sporadically. If I was with friends I’d have the usual bag but mine also included herbs, teas, medication, excessive quantities of water, earplugs, food I could eat there in case there was no food available (PoTs makes your stomach sensitive and as a result I’m gluten-free). I hated it, it was so draining having to be so prepared for every occasion and always thinking of the worst. I liked feeling spontaneous and up for anything when I was healthy but now I needed hour by hour plans of my days in advance to see what I can join in on, how best to manage pain, energy levels and when’s best to eat and drink. All to simply get to a doctors appointment. You never feel like your the positive energy in the room or appearing up for anything, which got to me in a big way. I needed to adjust and come to terms that at work and socially actually my illness, not me, was an absolute killjoy in my life.
Cognitive behavioral therapy for me worked. It does not help heeling any of the illnesses but did help me to feel happier within myself about having the illnesses which in turn helped me to do the best I can with what I had. I bought a useful book (I have bought several but this I liked, so would recommend, here.), it may be a good starting point to know if CBT is right for you. I realised with this book and in my sessions that I had two problems, I never felt good enough at anything and I struggled with the insecurity that deep down I was a wasn’t a nice person. As result of these insecurities, I spent a lot of my life doing things in order for people to perceive me in a certain way. My main subconscious goals were to be seen as ‘like-able’ ‘strong’ ‘independent’ and ‘fun-loving’. I spent all my energy on trying to make people believe these things but in 2014 when my energy needed to be spent on my illnesses and ignoring these goals, it was hard. It nearly made me crack in the first year, not being the person I wanted to be. But my therapist made me realise in my effort over the years to be perceived in a certain way, I never did anything to make myself believe I was actually not a horrible person and I was genuinely fun loving. I’m better but I still not fully convinced I’m that good of a person- but this change in my thought process gave way to a big change in my daily life decisions. How friends and family perceived me took a back seat, my physical and mental health was now and still is, center stage. I’ve lost friends because of this and it did scare me initially. Pre-illness my opinion was is if you have lots of friends you are popular and therefore happier. But now, post-illness, I have fewer friends and I’m the happiest I’ve ever been. I think it’s a lesson people both ill and healthy individuals could learn.
In the months on from CBT, I grew accustomed to not pleasing my friends and work colleagues, putting my foot down about what I can and can’t do. If one more person told me to ‘just come for a bit’ to a social event when all I want to do is crawl into bed, I will slap ’em. Coming ‘for a bit’ means, getting off the sofa, putting make up on to look alive, organising a bag with food/water/medication in case something bad happens, changing clothes, walking down two flights of stairs, a ten minute walk to the nearest tube stop, travel on the tube, walk to where the social event was. This in itself is exhausting to a chronically ill person and I’ve not even got to the event yet, let alone needing to get back home! So this was my life, monitoring everything, all the time. It’s crap and it’s not even a symptom of the illnesses, it’s the result of them. However as much as I moan here, I know I’m lucky to have even been able to leave the house.
This for me was the biggest element as to how I got better, organising my life correctly, saying no when it was needed and putting my illness above relationships and any kind of career. I know lots of people with chronic illnesses do everything they can to try and help the illness but also still push it with one or two elements of there life, whether it’s there job (which is what I did for a while in denial) or running around after grandkids. Health comes first. Every Time.
Diet and Nutrition
This I see as the foundation of my health on which the other elements of my recovery rested on in order to tackle my illnesses. I have always had a good understanding of diet, but before I was ill I used to be super healthy in the week and binge like hell on the weekends. This is so terrible for your body but at the time I was shallow, I was doing this to control being slim, not to be healthy on the inside. Coincidentally I’m arguably slimmer now only focusing on my inner health, so two birds one stone.
My PoTs made me gluten intolerant, so my diet is gluten free avoiding refined sugars and white carbohydrates. This is important for me because sugar spikes are bad for your heart rate (PoTs) and also don’t help energy peaks and troughs (M.E). I also made sure to eat every four hours, I aim to eat before I actually get hungry, with hunger comes low energy levels, something I absolutely have to avoid for M.E and when I’m hungry I’m super greedy.(at university I could get through a large dominoes pizza in 20 minutes, I feel in another life I could give man vs. food a good go.) Having large meals is also detrimental to me because post-big meal your bodies energy is focused on digestion, which doesn’t help me when I need all the energy I can get elsewhere. So for me, it was smaller portions of sugar and gluten free meals at regular periods. I also didn’t eat if I found I was hungry. It was almost setting my limits of what I could eat and then eating as much variety of that as possible, regularly throughout the day. I also incorporated supplement powders into my life, there healthy, easily incorporated and made me feel great. Examples include Matcha, Spirulina, Wheatgrass, Chlorella and Alfalfa powder. If you are wanting to try giving these a go I would recommend beginning with Matcha tea (here) and a hot drinker blender (here). I will, however, go over what supplements are appropriate for what scenarios in a blog post later on.
For my PoTs I needed my blood pressure higher to stop me from fainting, so salt goes on everything in excessive qualities. I use the good quality stuff to make it nice, I mean I eat a lot of the stuff so its good to make it bearable, I use cornish sea salt on everything (here) I have on occasion gone too far, deeming my soup one day to be like vegetables floating in seawater, but a minor set back considering I haven’t fainted in ten months. I also drink a tonne of water to keep my blood effectively pumping into my brain and to avoid it pooling in my legs. On average I’m drinking 3-4 litres a day.The key is to have always have a bottle with you whenever and where ever you go. I used plastic bottles for years and was told of all the scary chemicals that can cause stomach cancer with drinking water from the same plastic bottle daily, so I bought a stainless steel one, which I’ve had ever since. It probably is better for someone with PoTs health considering the quantity we need to drink. This is mine from Amazon here.
My average day of food on my path to recovery:
7:20 am – one litre of water
7:45 am – green smoothie and matcha tea
10:30am – porridge with skimmed milk, seeds, and dried fruit
12pm – matcha tea
1:45pm – soup/salad/something of substance with pulses or fish
4 pm- fruit, nuts or yogurt
6:30 pm – Dinner (a massive variety but it would all essentially be complex carbs and a lean protein. I’d never miss the carbs here, it just leaves me feeling rough the next day.) Pudding- oat and coconut crumble or a fruit gluten/dairy free cake.
8 pm fruit tea
N.B-I bloody love sugar, so I get why looking at that to some, might look intense, with sugar you have to gradually wean off it. Start with no sugar on your breakfast, or replace a tea with natural sweetener after lunch instead of a biscuit. And if you do have sugar always try and include it in a meal with good fats and protein, it helps with the blood sugar spike and doesn’t make you crave it next time or feel lethargic as just having a chocolate bar would. The science part is boring but it works for me.
Alternative Therapies (Acupuncture & Chinese Herbs).
I was very lucky to meet an incredibly talented and caring acupuncturist who was also training to be able to provide Chinese herbs to patients at the time. For me they went hand in hand, the acupuncture really helped with my pain and sleep quality. If I could have had acupuncture every day I would’ve but at £40 a pop and a dwindling salary due to high sales targets I couldn’t go more than once a week.
The Chinese herbs were like drinking Harry Potters famous polyjuice potion. After ten minutes like with the potion I would morph into my old healthy self for a few hours post drinking the disgusting miracle liquid. My headaches and nausea would lessen, my constant state of panic seemed to disappear and my energy felt at a more stable level. However similarly to J.K Rowlings potion, after two to three hours the miracle dwindled and I could feel the illnesses creeping back. A good starting point for PoTs suffers to see if homeopathy could be a good idea is to try liquorice root extract, this is also what I did and I responded well. Liquorice root is known to help low blood pressure, or hypotension, it can support your body to help with blood pressure levels to the desired level, warding off the stress factors such as dizziness, fatigue, and nausea. I tried with this here. I also tried several other herbs which did nothing, so don’t be disheartened if this doesn’t work. The fact you are looking and giving it a go, means you are still trying which is the best you can do. If you are thinking about doing either of these things proceed with caution, get someone who is reputable and cares about your whole recovery, with my acupuncturist and herbalist we also discussed the best things for me to eat to compliment my treatments and how I can go about managing appointments when I was too ill to leave my bed. I have heard stories of enquiring about Chinese medicine with the consultant being a nut job, trying to sell whatever they can, thinking because the customer is desperate they’ll buy anything. If it doesn’t feel right, walk away, it worked for me but it may not be right for you or the right doctor.
Meditation, Stretching, Massage, and Yoga.
This groups together for me because it’s all about making my body feel less frazzled as quickly as possible. I regularly meditated at work to stop myself getting worked up over; ignorant passing comments ‘So are you better yet? You’ve been skiving for ages’, high sales targets no one in my team were meeting and to save myself from punching people who moaned about the most menial topics when I could only dream of having their life. Over time I have got really good at my ten-minute meditation app (here), I would open my eyes and my mind would be fresher, I would be calmer and I could crack on with what I needed to get done. For this, to work the user needs to be really open to it and to keep at it. The first time I did it I felt nothing, but within a month or so with perseverance, the ten minutes were restful and restorative for me.
Yoga started as the only exercise I incorporated into my day at my most ill, the first few weeks I would be exhausted after what was essentially two or three stretches and meditation, which was dubbed ‘soulful yoga’ on my app (here). Again another app meant I could carry the 20-minute session with me wherever I went. It started as something that made me calmer and well stretched and I have gradually built up the intensity over the years to mean I’m stronger, more flexible with better posture and increased tone. I eventually incorporated pilates with DVDs in my own time, I used ’10 minutes solutions (here), it cuts it into chunks and made me feel like I actually accomplished something. I want to note here that doctors told me to do GET (graded exercise therapy). All it made me feel was frustrated I couldn’t exercise like before and question the doctor’s credibility because I would normally end up feeling worse. Stretching building up to yoga movements was my alternative to the doctor’s suggestion of GET.
My joint & muscle pain w
ere horrendous, I would get into bed and just lay there in agony, no matter how I lay, it would hurt. I’ve had this same pain when I was healthy only a handful of times. It feels exactly like you’ve done strenuous exercise all day, your body feels sore and tender everywhere, even getting in the shower is an effort. I used to dub this a ‘good sore’, it said to me I’d trained hard. But with my body feeling like this because I’d done a day in the office, you could visibly see my muscle atrophy the further I got into my illnesses, this was definitely not a good sore. With stretching, I tried my best doing it every evening, but some nights I was weak and I couldn’t move my body to stretch effectively, however my life changed with the purchase of an electric massager (here). I wouldn’t do this standing up, it makes me feel nauseous, but I’d lie down and use it for ten minutes and my body felt all fresh and new. The level of effort, pain, and cost versus the reward it gives makes the electric massager probably the most worthwhile, it’s a great low effort piece of kit that sorted me right out. I know it’s also helped others on numerous occasions, easing arthritis, ripped muscles and tendon injuries.
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