How it feels to have Chronic Lyme Disease/M.E.

It's not that often that I post about personal topics on the blog but behind the façade of pretty packaging and expensive skincare, is the reality of living with a very debilitating, chronic illness. I initially posted about having Chronic Lyme Disease here and today I want to share with you what living with it actually feels like.

Not everybody who suffers with Chronic Lyme has the same symptoms, it depends on which strain that the tick or mosquito was carrying so I can only tell you about how it affects me and my life. There also varying degrees of the illness and I go between moderate, severe and very severe (bedridden). The two predominant symptoms that I have are chronic fatigue - to the point where I feel like vomiting from utter exhaustion and feeling that even sitting upright is too much exertion and pain/inflammation - pains in the bones (like shin splints all over from head to toe), muscle pain and joint pain. I literally could not tell you when the last time was that I didn't have a headache - I don't mean the last day, I mean the last year. I have a permanent pain in my head, I have constant sinus infections, regular hemiplegic migraines (meaning they affect one side of my body) and also brain inflammation. Both of these symptoms are unrelenting. Fatigue is probably the most debilitating symptom and has gotten progressively worse over the course of the illness. For most people, showering, washing & drying their hair, brushing teeth etc are routine daily tasks but I cannot take these things for granted and there have been times when my husband has had to bathe me, brush my teeth and brush my hair - those are the times when I am at my worst but even at my best, on a day when I wash & dry my hair, nothing else can be planned because the fatigue from doing that task is overwhelming. Sometimes even talking leaves me breathless - hence why I enjoy blogging, or even better looking at instagram where I can just click the like button and feel like I am actually interacting with people without using too much energy.

I cannot tell you the last time that I looked like I had a normal jawline or neck because my glands are permanently enlarged because they are permanently fighting infection. One side of my collar bone is always raised and basically looks like a large lump but I have had it checked out twice and there is no actual lump there, it is just swollen.

Sensory overload is another huge and debilitating symptom. If lots of people are talking, the tv is on, there are bright lights, spicy food and even certain fabrics on my skin all at once, I feel like I am being punched in the head. My body cannot cope with a lot of senses being overloaded at the same time so I will retreat from a group conversation if I feel this happening. This is extremely frustrating for me as I loved socialising before I became ill and still want to, but the effects are excruciating and the payback afterwards lasts for days (and that is without me leaving the house - I am talking just about family being around - lots of chats, laughter and kids chitter chatter). My head will feel like it will explode and my skin will feel like it's burning.

Visual disturbances (blurry eyes or double vision) and confusion with words are also frustrating symptoms. I will quite often forget words, say them back to front or completely mis-read words - brain fog is the term most commonly used for this and it describes it perfectly - you literally feel like your brain is mush.

Fainting is a regular occurrence, although not as often as in the early days when I fainted a few times most days. I've had some close ones when I've fainted outside of the house & hit my head on paths and when I was trying to cross the road!

Digestive issues are another major symptom, although they are a little more under control at the moment. I am lactose & gluten intolerant and am not always as strict as I should be. It's a very sexy symptom with lots of time spent in the bathroom or doubled over in pain!

Insomnia and sleep disturbances are symptoms that I have a little more under control at the moment thanks to the This Works Deep Sleep range. I find the products have helped to regulate my sleep, thankfully as every symptom is exasperated when I don't sleep.

These are just physical symptoms, there are mental and emotional ones too but I'm pretty good at dealing with those and it very much helps that I am of a naturally very positive disposition and have the unwavering support of a brilliant husband.

I love beauty - always have, always will. It is a distraction for me, a way of trying to make myself look less ill - masking my reality, I suppose. I hate being ill and don't want it to define me so by applying my make-up, people won't truly know how much I am suffering. 

I have lived with this illness for 15 years and am on treatment, which is expected to last for another 12 months. It is tough-going but any progress will be very welcome.

Living with an invisible illness is not easy, so if you know somebody who is suffering from an invisible illness - whatever it may be, I would urge to help them, believe them, show compassion. Tell them you don't know what it feels like but you would like to help. Don't see their illness as them - it is only part of them and a part they don't want. 

Many people have told me that they would have cracked up a long time ago if they had this illness and had spent all of the money we have, and still find myself so ill and with so many dashed hopes of treatments that didn't work, especially with something that is so mis-understood but I have always coped extremely well. I will do a post at another time with my coping strategies and how I don't let it define me.

I love being part of the blogging community because it means I can interact and connect with people without using too much energy. It has provided me with a very welcome distraction and I am making some lovely friends along the way. I would love some day to be well enough to go to a blog event, but for now am so happy to read other bloggers' experiences of that.

I would love to know if you have ever heard of Lyme Disease or if you know somebody who suffers from an invisible illness and how you help them. Please tell me in the comments below.

Thanks for reading!

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