Self-care and body image with M.E or Chronic Illness

July 7, 2022 by SleepyBookworm94 ♥ 5 Comments

Positive body image is something a lot of people with chronic illness struggle with. When your body is physically unwell it’s hard to feel positive about it. With chronic illnesses like M.E, it’s easy to feel negatively about your body because physical and mental symptoms limit your life and make every day a fight. A lot of medication given for M.E symptoms causes weight gain and an increase in appetite which doesn’t help when you can’t exercise without causing a serious relapse of symptoms and post-exertional malaise. Then there’s the other side, where fatigue makes you unable to put effort into proper meal prep and there are days where the fatigue is so bad you just skip meals, leading to weight loss. It’s hard to feel good about your self and your body when you deal with these things.

I’ve struggled with body image for a long time, but chronic illness has really brought it to the forefront of my mind. My weight is a major factor in this struggle, I’ve never been slim, in my late teens I was a size 12-14 and I was always curvier than a lot of my friends. Since developing M.E I’ve put on weight, mostly due to medication and a lack of mobility. I’ve lost weight, then put it back on again. Since coming off medication I’ve lost a bit of weight, I’m now a size 18. Ideally, I’d be happy at a 16 but for now my weight is stable. Along with this, a number of other M.E symptoms affect me confidence; hyperhidrosis, loss of muscle tone, very pale and thin skin because of a lack of vitamin D etc. I also have lipoedema in my legs. All of this causes a lot of self-esteem issues and a very negative body image. I find it hard to look in the mirror some days and the impact of that on my mental health is overwhelming. It’s at a point where my family comment on not having any pictures of me because I hate having my photo taken and I avoid cameras. I graduated last year, and I still haven’t taken a photo with my degree because I can’t stand the idea of looking at myself and being disgusted in what should be a positive and happy photo memento.

I’ve noticed over the past couple of years this negative body image has affected the way I treat my physical body. I lost my enjoyment of make-up, stopped using hair straighteners, stopped buying all the nice bath bombs and lotions that I love. I’ve opted for buying bland and loose clothing which is comfortable when I’m having bad and fatigue days but doesn’t look great. I see items of clothing I really like but avoid them because I don’t think they’ll look good on me. It’s like, mentally, I don’t want to treat my body in a nice way because I feel so negatively about it and because my confidence is so non-existent. It’s a very damaging experience and I’ve become concerned with the amount of influence it has over my life. Over the past 6 months I’ve tried to bring back the little self-care acts that I’ve been ignoring, and I forgot how the simplest things can make you feel good and refreshed. So, I thought I’d make a list of some small self-care acts which have made me feel good again.

Face Masks: I’m conscious of my skin and looking after it so I recently bought myself a whole pack of different peel-off face masks and I’ve just been doing one every week. I just set half an hour aside one night before bed and apply a face mask. It’s really helped me bring my skin back to a healthy state, it takes all the dirt out of my pores and just makes my face feel refreshed and completely clean.
Bubble baths and bath bombs: I used to be obsessed with bubble bath and bath bombs. Every birthday and Christmas people buy me special bath bombs to add to my collection. A shower is perfect when you’re fatigued and just want a quick wash. A bubble bath is perfect for moments when you just want to de-stress though, when you just want to pamper your self and take some time out for yourself. So, if you are lucky enough to have a bathtub, it’s worth buying some bath bombs and some bath oil, and just setting aside that time to just focus on yourself and relaxation.
Buy some new make-up to try: I really miss the days where I’d spend hours picking out make-up and applying it before going out. I’m lucky enough to have a sister who does Avon and I’m always buying new makeup and then putting it in a drawer to never be used or seen again! But when I do wear makeup, I just feel so much more myself and there is a boost of confidence that comes from changing the way you look. Covering up all that tired skin and dark circles under the eyes. It makes me feel a lot more like a woman and it just makes me more confidence in facing people, almost like armour.
Nail Polish: I’m so jealous of any person who can grow their nails to a good length. My anxiety makes me an obsessive nail biter. My nails are always down to the skin and frayed. But I love nail polish. I have a completely crazy amount of nail polish colours and they just make me happy. When I’m having a bad day, just painting my nails a fun colour makes me happy. I might have extremely short nails, but it doesn’t stop me painting them crazy colours, even if no one else sees them. I do it for me, to boost my own mood and have that moment where I’m just focussing on myself and a part of my body which I can make look pretty.
Take time off from technology: When I’m stuck in bed, I have a tendency to just swipe through social media and the internet. It’s not always a good thing, I’ll see friends updating their photos and social media, out having fun, having wild nights out and getting lunch with friends. Meanwhile I’m too unwell to get out of bed and have a wash, it just crushes my mood when I’m already physically not feeling great. So, I think a simple self-care act you can take is just ignoring your phone, iPad or computer for a set period of time. Just switch of social media and the internet for an hour or longer.
Get a haircut: I went 2 years without getting my hair cut once. As a woman with thick, wavy hair, it was a nightmare. I was just not physically well enough to go out and get my hair done like normal people, sitting for a long period of time was painful and I suffer with very painful skin (allodynia) so the brushing, drying and straightening really hurt my scalp. So, I just avoided getting it cut. In the end my Mum asked a mobile hairdresser to come to the house and I’ve been having it done ever since. It’s a great feeling just getting your hair cut, I don’t have anything fancy done, just a trim and thin out but I always feels so much better after. Mobile hairdressers are great for people with chronic illness because they allow you to have your hair cut at home, where you are comfortable. It involves a lot less energy and I’m not fatigued by it like I was when I had to go out and interact with people in a salon.
Get outside: Fresh air doesn’t fix everything but it does boost your mood. M.E leaves a lot of people housebound, I spend the majority of my days at home. But just getting outside for 10-20 minutes and sitting in the garden or taking a 10 minute walk round my village makes me feel much less stagnant. Nature is free and people don’t pay attention to it enough or the ways it can improve mood and impact on people living with mental or chronic illness.

These are just a few things I do to make myself feel good and more positive about myself. The main thing about self-care is remembering to do it for you. At first, I felt silly doing my nails and putting on make-up just to wander around the house where no one could see, it felt pointless. Self-care isn’t about pleasing other people, it’s sad that a lot of people feel like they must look or be a certain way, just to please other people. Do things because they make you feel good and because you care about your body, however broken and dysfunctional it may feel it times.

M.E Awareness 2022: 10 things I wish people understood about M.E.

May 9, 2022 by SleepyBookworm94 ♥ 6 Comments

1. Despite the other common name for the condition (Chronic Fatigue Syndrome), fatigue is not the only symptom of this illness. M.E/CFS is a multisystem disease and affects various areas and systems in the body. There are a number of symptoms that affect someone with M.E; widespread pain, stomach issues and food intolerances, sleep disturbance, post-exertional malaise, autonomic dysfunction, cognitive issues, sensitivity to light and sound, orthostatic intolerance, tachycardia, flu-like symptoms, swollen glands etc. That’s just some of the symptoms! M.E is so often thought of as ‘just a fatigue disorder’ and that’s wrong, it influences multiple areas of the body. Also, worth mentioning here is that fatigue isn’t just tiredness. Fatigue in a person with M.E isn’t just ‘being tired’; it’s full body exhaustion, not being able to physically function because your body can’t produce the energy. Not being able to eat, move around, wash, and sometimes even not being able to get up to go to the toilet. It’s an exhaustion that leaves severe M.E sufferers completely bedbound. It’s not just tiredness, it’s overwhelming exhaustion that makes functioning impossible, it’s debilitating and very life-limiting, it shouldn’t be trivialised or underplayed.

2. M.E is a fluctuating condition. That means symptoms can change on a day-to-day basis and the severity level of symptoms can also differ from day-to-day or week-to-week. For example, one day I might be able to walk my dog for half an hour or go out and do some shopping, but the next day I might be so overrun with pain and exhaustion that I can’t get out of bed or manage my own personal care. It doesn’t just differ day to day either; M.E can leave me housebound for a whole month and then I might have a good week where I have the energy to get out a few times and exercise or socialise. There are varying levels of M.E and sufferers can go from mildly affected to severely affected or the other way around. Some M.E sufferers experience years of hardly any symptoms but then relapse and are severely affected again. It’s not a predictable disease. There is also the issue of post-exertional malaise which refers to the consequences of using energy. M.E sufferers experience a kind of payback for activity, it’s hard to understand if you’ve not experienced it. It’s a flu like feeling after activity. So, I might have the energy to go out, socialise and go shopping but within 24 hours I will experience a crash for expending that energy and it could leave me bedbound for days. It’s why M.E sufferers must be very considerate about what they use their energy on, because doing so might cause a huge flare up of symptoms that lasts 48 hours or more, which leaves us unable to function normally.

3. There is no cure or definitive treatment for M.E. I can’t just take a ‘magic pill’ and make M.E disappear. There have been various treatments recommended for people with M.E and some of these have been more harmful that helpful. The important thing to note is that M.E is an under-researched disease with no definitive cause or explanation for why it develops, so it’s about managing symptoms rather than treating the root of the problem. So, management of some of my symptoms are done by medication, pain killers, antidepressants, stomach tablets etc. I’ve undergone a few courses of CBT (Cognitive Behavioural Therapy), been to physiotherapy, had lidocaine infusions, done acupuncture sessions etc. But all of this doesn’t fix M.E, it doesn’t make it any less debilitating; it’s a crutch not a cure.

4. There is no time limit with M.E. There’s no window of recovery or limit to the illness. M.E can affect some people for 6 months; it can affect some people for 6 years and it can affect some people their whole life. I’ve been on the receiving end of questions like: “well, how long are you going to be like this?” and “shouldn’t you have recovered by now?”. There is no ‘time’ I should feel ‘better’ by, M.E isn’t governed by a time limit, it affects everyone differently and for various lengths of time. It’s important not to make someone with M.E feel like they haven’t ‘recovered’ quickly enough or put some made up time limit on their condition. M.E has no expiration or ‘best before’ date, it’s not a condition that will miraculously disappear after a few months. The body takes as long as it needs, M.E doesn’t just expire.

5. M.E makes planning and socialising very difficult. M.E doesn’t notify me when it plans to have a good day or bad day; I can’t predict how I’m going to feel tomorrow, let alone next week. As a result, I have to cancel a lot of my plans last minute and I hate it. But it’s not out of laziness or rudeness. I’m not cancelling because I’m being rude or can’t be bothered. It’s worse with social plans, I hate cancelling on friends and family. I hate to think that they believe I’m just being antisocial or blowing them off. The reality is; I’ve woken up that day and the energy just isn’t there, the fatigue is too severe for me to wash, get dressed or even get out of bed. I might not always make that clear because it’s embarrassing to admit and I’m ashamed to reveal that weakness. Like I said in my first point, M.E affects multiple areas of the body; but it also affects multiple aspects of life and socialising is one of these. It can have a huge impact on mental health, not being able to see friends or family, not being able to attend events or stick to dates is devastating. I wish more people understood that cancelling isn’t me being rude or neglectful, it’s out of necessity because I have an unpredictable disease. Just know that someone with M.E might cancel on you, but it doesn’t mean they don’t want to see you or aren’t interested. Support and friendship are extremely important to someone with M.E because it’s a very isolating illness.

6. While advice and suggestions on my M.E are appreciated when they come from a place of care and concern; judgements and criticisms of how I manage my illness are not appreciated. I’m sure the majority of M.E sufferers have heard the typical: “you just need to get out more”, “you just need to do more exercise” and “you just need to try harder”. I can’t begin to express how upsetting those types of comments are. If you haven’t suffered with M.E or had any experience with the condition, then it’s hard to understand how it affects someone with M.E, so be considerate when making comments and giving advice. There’s a difference between constructive suggestions and unhelpful criticism or judgements on how that person with M.E manages their illness. For example, telling me “You just need to get out and exercise more, get some fresh air” isn’t helpful to me because I’m not choosing not to do those things, my illness makes it extremely difficult. All that comment does is make me feel lazy and ashamed and more frustrated with my illness. Getting outside and being active is so beneficial for mental health when it comes to living with M.E but it’s not going to make me ‘better’ and suggesting it’s that easy just trivialises my suffering. Instead try encouraging and supporting someone with M.E to do these things. My Mum is a pro at this, when she realises I’ve been stuck inside a lot, she suggests we go somewhere for a short walk and makes it easier for me by bringing fluids, a camping chair and; just makes it a positive thing rather than just criticising me for not trying hard enough to get out. Advising someone with M.E is about support and understanding, not just pointing things out and telling them to change how they cope.

7. Sleep doesn’t make any difference to someone with M.E. A ‘good nights sleep’ is not going to miraculously cure my fatigue; because like I’ve said, fatigue isn’t just tiredness. A very prominent symptom of M.E is unrefreshing sleep. When the average person sleeps, their brain and body go through a sort of, restoration process. The body recovers from the days activities when you go to sleep at night. But with M.E this doesn’t happen. I wake up just as exhausted as when I went to bed the night before. People with M.E suffer with nonrestorative sleep which basically means, the body doesn’t recover normally during sleep, it doesn’t restore energy properly. So, I can wake up with absolutely no energy even though I’ve not done anything yet, I don’t wake up feeling refreshed and ready for a new day. It’s an ironic aspect of M.E that I sleep so much yet don’t feel any relief from sleeping. Someone with M.E might have to sleep during the day for example, but that sleep won’t fix most of their symptoms. For me, my mental and cognitive abilities begin to decline very quickly in the afternoon, I start to lag and struggle to stay awake or function so I will have a nap, and although it helps short term, physically it doesn’t change my symptoms. It doesn’t matter if I sleep too much or not enough, I still feel the same exhaustion.

8. M.E can affect anyone, there is no criteria for this disease. M.E can develop in a completely fit and healthy person, it doesn’t just affect people who may have other health issues. Some people can identify a trigger; for me it was glandular fever but in some people it just develops over a period of time with no clear cause. There is a misconception that M.E only develops in people who already have certain health problems but that’s not the case. M.E doesn’t just affect a certain type of person, it could develop in someone with previous illnesses or it could develop in someone who’s never been seriously ill and is in peak health.

9. M.E is not a psychiatric disease! M.E is too often put down to psychiatric issues and labelled as a mental illness. This is false. M.E is classified by the World Health Organisation as a neurological disease. This is because of the number of neurological symptoms an M.E sufferer experiences; autonomic nervous system dysfunction, cognitive dysfunction, hypothalamic dysfunction, sensory disturbance etc. The misconception that M.E is a mental illness, or a psychiatric issue comes from very outdated opinions and ignorance. This hasn’t been helped by the fact that cognitive behavioural therapy was flagged as a treatment option for M.E for so long. While someone with M.E might also suffer with mental health problems, these are two different health conditions. So many people who suffer with M.E still experience doubt that M.E is real because they are told: ‘it’s all in the mind’. It’s a horrible misconception and can be really distressing for someone living with M.E; to be told their physical symptoms aren’t real. For so long, people with a diagnosis of M.E were referred to psychiatrists and I still see it happen now, it’s just ignorance. M.E is a physical, neurological disease and it’s not something that can be cured with psychological therapy or antidepressants.

10. There’s no diagnostic test for M.E. A lack of research in M.E in the past has meant, there isn’t a definitive marker associated with diagnosing M.E. When I was going through the diagnosis process, a lot of people said: “can’t you just have a blood test to confirm it?” and it was frustrating. It almost makes it seem like there’s no proof and people then wrongly label the M.E symptoms as psychological. Diagnosing M.E is done by ruling out other conditions with the same symptoms, it’s a process of elimination. As a result, it can take a long time to be diagnosed and this can lead to the misconception that it’s not a real, physical illness. The truth is, there’s just not enough research to produce a definitive test for M.E, I hope that this is something that will change soon, as more research is undertaken. But just because there is no particular blood test or scan that can identify M.E, doesn’t mean it isn’t a real, debilitating illness.

Hard to Bleed

April 8, 2022April 8, 2022 by SleepyBookworm94 ♥ 1 Comment

Something plenty of chronic illness warriors are familiar with is the blood test. I’ve recently been having a number of blood tests at the hospital, investigating my innappropriate sinus tachycardia. It’s been a nightmare and I wanted to share my experience because I’ve found myself so frustrated with my own body and with elements of the healthcare system itself.

I’ve had a lot of experience with blood tests; although M.E isnt a condition that can be diagnosed with a blood test, it involves blood tests to rule out any other illness with similar symptoms. Unfortunately blood tests are a literal nightmare for me because I have deep set veins. The majority of people can see their veins, the blue lines running down the arms, in the hands and feet but mine don’t show up; my skin is literally just like a blank piece of paper. My veins also can’t be easily identified by feeling for them; this means that when I need a blood test, it’s incredibly hard to do. I’ve had 3 blood tests at the hospital in the last couple of months and everytime I’ve walked out with upwards of 10 needle holes, but no actual blood being taken.

One of the things that this experience has highlighted for me, is the cracks in the NHS system and the frustration felt by the nurses working on the front line; as well as my own frustrations as a patient. My recent blood test appointments with the hospital have been scheduled as 15 minute appointments; each one has lasted more than an hour, with the longest being almost 2 hours. It’s been frustrating for myself and for the nurses. The major problem has been that the blood department in the hospital does not have access to an ultrasound machine. This is needed for people with deep set veins because it’s one of the only ways to identify a vein and guide a needle to it. Without it, it’s like a game of ‘pin the tail on the donkey’ but with a lot more pain. With the ultrasound machine, there’s no guessing or estimating, the nurse can literally see inside my arm and know exactly where to find my veins. But, like I said, the blood room at my hospital doesn’t have this piece of equipment. I’m not the only person in the world to have deep set veins, i’m actually one of three people in my family who have this issue. There are so many more in the world and it seems like common sense to me, to have an ultrasound available in a blood room for these patients. During my last blood test, the nurses were discussing the fact that they’d requested an ultrasound machine for their department and it had been denied. I heard them voice their frustrations at not having that equipment despite having plenty of ‘hard to bleed’ patients and being turned down and ignored by their higher ups. It was insinuated that this is because the cost of the machine would outweigh the benefits. To me, this is nonsensical. My 15 minute appointment lasts over an hour, takes three nurses and sometimes a doctor, a whole tray of needles, swabs and other blood related equipment. Meanwhile a whole que of people needing blood tests and needing to see a nurse are piling up outside, clinics are starting which require the nurses busy with me and I’m sitting in this madness; thinking how an ultrasound machine would prevent all of this.

I experienced a development to this madness last week when; after 40 minutes of attempting to get a vein, I was asked to sit with my hands under hot running water. The nurses hoped this would bring up the veins in my hands. Warm skin is key in blood tests, it makes veins easier to find and see. I tried the sink located in the actual treatment room, and three sinks in the department bathroom; none of which had any hot water. This is a hospital; a place where hygiene is of the utmost importance, especially in recent years. I get that most hospitals are old buildings and pipes can be tempremental but this shouldn’t be an obstacle in this day and age. I couldn’t get hot water from any of the taps in that department, each one was ice cold. I don’t know if I’m crazy or over thinking, but to me hot water is a basic requirement in any hospital. There shouldn’t be a whole department of people trying taps and being unsuccessful in getting any hot water. I’m not even talking about a small hospital, this is a huge city hospital. The worst part for me, was seeing the frustration the nurses felt. They are being told to get blood from a patient but they don’t have the equipment they need to do so. Nurses working for the NHS now are suffering, departments are understaffed and there’s a huge backlog of patients. As I sit there, for hours being repeatedly stabbed for blood; the nurses are falling behind and having to apologise to their bosses; patients that are waiting are getting frsutrated and taking it out on them. I can’t help feeling like I’m wasting their time and that I’m a burden; and as a patient it’s a horrible feeling to have. I am seriously considering not going for my further blood tests because each time it’s so much pressure on the nurses and it’s them that get reprimanded for taking too long or falling behind. I hate causing a fuss, I hate being the centre of attention, I hate being a burden. But each time I go for a blood test it’s the same; I take up multiple nurses, multiple resources, hours of time needed for other patients. But I also can’t help feeling that this could be prevented if the bosses just supplied the department with a basic piece of machinery, the ultrasound.

It hits so much harder at the minute as taxes and National Insurance rise, the government state that this increase is to better support our NHS and help get over the covid backlog of patients; but I think there was serious underfunding way before covid hit. Departments not having access to machinery or even hot water is unacceptable and it’s those nurses and doctors on the front line that have to deal with this. It’s the NHS staff on the front line, working face to face with patients who take the brunt of the pressure and consequences. It makes it sound like a joke when the government justify rises in taxes etc on providing better financial support to the NHS, but there’s departments going without hot water and being denied necessary equipment because the cost outweighs the benefit. Why isn’t this money going on the basic requirements that enable nurses and doctors to do their job? why do they have to struggle for resources? It doesn’t give me any confidence in the government’s promises, their priorities are so skewed it’s laughable. I suspect the money they spent supplying alcohol in their lockdown parties could have paid for an ultrasound machine and that’s what cuts the hardest.

My recent experience isn’t a one off, I’m sure there are countless other patients feeling let down and abandoned right now. But I think it’s important to remember that this failure isn’t caused by the people working in the NHS. I’m always surprised when I go for my blood test at how selfless and supportive the nurses are with me. They know when they see me in that blood room that it’s going to take a prolonged amount of time and effort to deal with me but it never shows in their attitude, they continue to be kind and compassionate towards me. I think it’s important to remember that these front line workers are doing their best but their work is made ten times harder when essential equipment and resources are withheld from them. It shouldn’t be this way, and it’s a huge failure by officials to let it continue this way.

World Book Day: How books make my life with mental and chronic health issues bearable.

March 3, 2022 by SleepyBookworm94 ♥ 1 Comment

It’s World Book Day! As my blog name highlights, I’m a massive bookworm! I’ve been this way since I picked up my first book in primary school. Books have been a constant companion through my life; they’ve been my escape, my friends, my councillors, my inspiration and my medicine.

I’ve struggled with severe depression since I was in my teens, and I genuinely believe there were times when picking up a book prevented me self-harming and prevented me making further harmful choices. I think the power of books to change a reader’s mood is magical, it’s an underrated element of reading. The power that authors have, to affect a readers’ mood; with just their words, is a factor that has fuelled my love of reading, and for writing. Another aspect of books and reading that impacted on my mental health is an author’s ability to connect and relate to someone they’ve never met. Books truly can bring people together. Depression is a cruel illness; it isolates you, makes you push people away, so you are stuck with your own thoughts. It makes you question your own mind and sanity. Depression makes it hard to interact with other people because there’s no way to express how you’re feeling. Books helped me with this aspect of mental illness too. If you look, there are so many books out there written by people brave enough to write about their struggle with mental illness and it’s these books which have the power to unite those struggling. It’s these books which can show a reader and a mental illness sufferer that they are not alone, that there are others going through the same struggle. One such book that really helped me understand my mental health and feel less alone is My Sh*t Therapist & other Mental Health Stories by Michelle Thomas (I will post amazon links to any book mentioned at the end). Reading this book gave me a huge insight into just how common mental illness is. There’s a huge stigma in opening up about mental illness and that’s what makes it so isolating; so, reading about someone else’s experience and reading thoughts that I was experiencing really had an impact on me. Another inspirational book on life with depression is: The Bell Jar by Sylvia Plath. The Bell Jar is classic literature, and I found the fact I could relate to someone who lived long before me, reassuring in a way. It’s a beautiful book and a really honest expression of living with mental illness. I connected to Sylvia Plath’s words; and her bravery to write about depression when it was so misunderstood boosted my own resilience and motivation to keep fighting.

After I developed M.E, reading became even more important to my wellbeing. Chronic illness is a daily struggle and there are aspects of it that limit how I live. I don’t like referring to it as life-limiting because that sounds like I don’t live, rather it’s that I have to live life at a slower and calmer pace. I was surprised to find that my reading tastes changed after developing chronic illness. I found myself searching for more adventure and exploration in books, maybe because I felt so stuck and stagnant. As a literature lover and a bit of a nerd, I am ashamed to say I’d never been interested in The Lord of the Rings! It’s a book that never appealed to me before developing chronic illness and it was my frustration with being stuck in bed that pushed me to give it a go. At that time, being housebound and bedbound, I just wanted adventure and a new experience; The Lord of the Rings by J.R.R Tolkien gave me that. It was the trilogy that opened my eyes to the fantasy genre and gave me a real love for the magical and fantastical in literature. The writing is so absorbing and engaging that despite being stuck in bed, I felt like I was meeting new characters and joining them on a truly great adventure, in a completely new world. I went on to read the Game of Thrones series by George R.R. Martin, which was a whole new experience, maybe not for the faint hearted because there is a lot of violence and death! But it took me out of my bed and into a new world for hours and it made my struggle with M.E manageable. I felt like I was still experiencing something, I wasn’t just sitting stagnant in bed; I was fighting great wars, flying dragons and running with wolves. It’s this experience that renews my love for literature every day, it’s such a powerful and underused asset. In a world that’s evolving and becoming more technology ruled, it seems like literature and books are falling out of fashion. I think that’s a huge shame because books have supported me through so many life events, so much heartache and struggle; that companionship shouldn’t be forgotten. I will endeavour to teach my nieces that books are far more exciting than Netflix, despite their eye rolling and disbelief; because literature is timeless. I shall conclude this post with the truly wise words of a much loved character: “Words are, in my not-so-humble opinion, our most inexhaustible source of magic. Capable of both inflicting injury and remedying it.” – Albus Dumbledore (Harry Potter series by J.K. Rowling).

Book Links

(Note, audio books are a great alternative if you suffer with fatigue, brought on by concentrating and eye strain. M.E means I have to take a lot more breaks when reading and audio books are a really good option if you suffer with brain fog. If You have a kindle then there are settings that reduce brightness and enlarge font etc which make reading a lot more accessible)

My Sh*t Therapist: & Other Mental Health Stories eBook : Thomas, Michelle: Amazon.co.uk: Kindle Store

The Bell Jar eBook : Plath, Sylvia: Amazon.co.uk: Books

The Hobbit & The Lord of the Rings Boxed Set: J.R.R. Tolkien: Amazon.co.uk: Tolkien, J. R. R.: 9780261103566: Books

A Song of Ice and Fire, 7 Volumes: The bestselling epic fantasy masterpiece that inspired the award-winning HBO TV series GAME OF THRONES: Amazon.co.uk: George R.R. Martin: 9780007477159: Books

Harry Potter Boxed Set: The Complete Collection (Adult Paperback): J.K. Rowling – Boxed Set : Rowling, J.K.: Amazon.co.uk: Books

Choices and Sacrifices when living with M.E: Driving.

February 4, 2022 by SleepyBookworm94 ♥ 1 Comment

With a chronic fatigue disorder like M.E there are personal choices which are made, and they are not always understood or accepted. I’m 28 and I’ve not passed my driving test or made any great attempt to begin driving. I did lessons when I was 17 like most teenagers, excited about the potential freedom. I unfortunately had to cease having lessons when I was 18 and started to experience severe social anxiety. Then at 21, I developed M.E and I’ve never considered restarting my driving lessons. One of the biggest criticisms I face from family and other people, is my inability to drive. I get very frustrated by it at times because, for me it’s not an option. It’s not that I’m being lazy or can’t be bothered, it’s not because I like being chauffeured by family and friends. It’s because I genuinely think I’d be an unsafe driver. You see the signs all over the motorway: “Don’t drive tired, take a break”, well, I’m permanently tired. The very nature of my illness is overwhelming fatigue and it’s not just a feeling of tiredness but a fatigue that effects my whole body and my mental and cognitive abilities.

The thing about M.E is, it affects everyone on different levels. I’m sure there are people with M.E who do drive and I have no issues with it, I’m envious. But for me, it’s not worth the chance. There are days that fatigue fogs my mind so much; I forget to eat. There are times my brain is so foggy that it doesn’t perceive danger like normal, I can touch a boiling hot pan or baking tray without oven gloves because I’m too fatigued to take precautions. Fatigue puts me at risk and often leaves me feeling like an idiot, because my brain processes things so slowly and it takes so much effort at times just to remember simple things. So, do I think I’d be safe behind the wheel of a car? Absolutely not. More importantly, I wouldn’t just be putting myself at risk but everyone else on the road. It’s easy for me to laugh off comments like “When are you finally going to be an adult and drive yourself around?” or “when are you finally going to pass your test and get out there”. As the eldest child in the family, it’s often pointed out that all my younger family members have learned to drive while I just sit around putting it off. I laugh it off and make excuses like “I can’t afford it” or “It’s just not something I’m interested in” because it’s easier than admitting to people, that I don’t feel well enough physically and mentally to drive. It’s hard. Most people’s judgements fall on not understanding M.E, at not understanding it as more than a simple tired feeling. People are ignorant of the countless effects M.E has on the body, it’s not just one symptom. M.E affects my fatigue levels, my quality of sleep, my mental and cognitive abilities, my autonomic nervous system, my immune system, my pain levels, my ability to heal efficiently, my reflexes, my senses…It’s a multisystem disease, not just being tired.

I’ve made a choice not to drive, if my condition improves or I get to a point where my fatigue isn’t so constant and overwhelming then I would consider it. Who wouldn’t want that freedom to go anywhere? But I choose to sacrifice that element of life because as a responsible person, I realise that I wouldn’t be a good driver. I accept that my illness would make me a less alert and safe driver. M.E means making choices and accepting certain limitations. I make a similar choice when I decide I don’t want children, despite people telling me I’m 28 and my clock is ticking! It’s not that I don’t want these things in the future or am discarding them forever; it’s just me accepting that right now I’m not in the position to do these things. So, I’m grateful to my parents for driving me around whenever I need it and I’m grateful to my younger sister for letting me spoil my nieces and treat them like ‘surrogate children’. But most of all, I’m grateful for those that accept my decisions and support them, those that understand it’s not easy to make these decisions and live with these limitations. I choose to listen to my mind and body and let it guide me in what I can and can’t do, that’s how I live with M.E, by making the most of small joys and accepting that there are sacrifices when living with a chronic illness. But it doesn’t mean I’m not living life; I’m just living it at my own pace.

The Big Garden Birdwatch and Nature’s effect on Mental and Chronic Health Conditions

January 30, 2022 by SleepyBookworm94 ♥ 0 Leave a Comment

This weekend was the Big Garden Birdwatch and it’s something I really enjoy taking part in, as a hobby photographer and as a person with chronic illness. M.E leaves me housebound a lot of the time and being able to keep that contact with nature is a big mood lifter for me.

Before I developed M.E I loved walking, there was no limit to how far I could walk or how long I could stay out wandering around fields and forests. It’s one of the things I miss the most, that complete freedom to walk wherever and for however long I wanted. I especially enjoyed discovering nature; wildlife and plant life, it was refreshing and as an introverted person, I enjoyed that relationship with nature and the outside. I lost that connection when I developed M.E. Walking became something that triggered an overwhelming fatigue, pain and post-exertional malaise. I’d never felt more unfit, struggling to cover any distance without pain or breathlessness. Instead of feeling uplifted and refreshed from walking; I felt physically unwell and unhappy. With that, I lost my love of nature, I lost that enjoyment at seeing wildlife and discovering wild, hidden places.

Photography changed that for me. 80% of my pictures are taken from my home or garden. It’s also rekindled my love of walking; despite the limits I still face. It’s taken the focus off the pain and fatigue when I walk and refocussed it on making the most of being outdoors and capturing that feeling for days I can’t manage to get out for a walk. When I’m out with my camera, I still experience that breathlessness and pain but now it’s less about forcing myself to walk a certain distance, pushing myself too far so I don’t feel lazy. It’s now about making the most of being outside for even a short time, taking pictures makes me stop more often, I can take a rest and capture photos of nature around me, then walk a short distance and repeat. M.E has made me appreciate small joys more, just being outdoors in the country for half an hour gives me a great sense of achievement and happiness. I accept that I can’t walk without limitations and there will always be that post-exertional payback later but that boost to my mental health and wellbeing is worth it.

Of course, there are many days I don’t have the energy or strength to go out and walk for a bit. Being housebound with chronic illness is often confused with being antisocial or lazy and I find those judgements to be quite hurtful. It’s a very isolating experience and something that only other chronic illness sufferers can understand. It’s so easy for people to say “maybe if you just got out more, you’d feel better” or “you need to walk and exercise outside more”; but those people have no understanding of M.E and the physical repercussions of pushing the body to be active when it’s already struggling.

One of the reasons I love The Big Garden Birdwatch is because it encourages people to take an hour and just look out and see what nature is just outside the window. As a person with chronic illness and someone who is stuck indoors a lot; it brings the outside, indoors for a bit. It makes you appreciate how much can be seen just from a window, how much nature and wildlife is around us every day. I take many of my bird photographs from my living room; I can be resting on the couch and still enjoy the wildlife and outdoors through my camera. Once those photos are taken, I can then keep those snapshots and when I’m feeling down and exhausted; remind myself of the wildlife and nature that exists outside, and it keeps my hopes up. With every picture I take, I feel a connection to nature again. It’s encouraged me to share my photos more, to give others in similar situations to myself a brief look at nature, to give those who are housebound a reminder of the outdoors. And by sharing photos of wildlife, I’ve taken from my own window, I feel like I can remind those who are housebound that there are ways to connect with nature despite chronic illness barriers. Yes, M.E forces me to be housebound much of the time but it’s not going to stop me enjoying the outdoors and trying to find ways to remain connected to the outside world.

With the Big Garden Birdwatch taking place this weekend, I though it would be a good thing to share some of my own bird photographs. To highlight that being housebound doesn’t mean being isolated from nature and the outdoors, to encourage those with chronic illness to take an hour and see what lives just outside. I hope that my photographs show how beautiful nature is and how accessible it is. Being housebound with chronic illness doesn’t mean we have to cut ourselves off from what’s outdoors. Realising this has definitely improved my outlook and mental health and with every photo I capture, I boost my mood and suppress that isolation I feel being stuck inside a lot.

Covid restrictions easing isn’t the same for everyone.

January 25, 2022 by SleepyBookworm94 ♥ 2 Comments

Much of the news currently is focussed on the easing of covid restrictions, the scrapping of ‘Plan B’ and the return to normal, unrestricted life. The media is portraying it like we’ve defeated covid and there is no longer any risk. But for many who are clinically vulnerable and high risk, that risk hasn’t changed.

As someone included in the vulnerable group and as a person who lives with someone who is clinically vulnerable; I feel like the media and government have lost sight of those who are more vulnerable to developing serious illness through covid. Yes, we have a vaccine now and that greatly reduces chances of developing serious complications due to covid; but it isn’t a guarantee. Nothing in life can be guaranteed. For those living with chronic illness, any virus or infection can trigger a big relapse, a worsening of symptoms and overall health. As a M.E sufferer, a simple cold takes me weeks to recover from. I’ve had viral illnesses or infections that have taken me months to recover from physically. So, covid is still something I worry about catching. It’s still something I would like to avoid. There is also a huge number of housebound M.E sufferers who haven’t been able to get a vaccination because they can’t physically travel to get one. It’s easy to complain and blame the unvaccinated for covid deaths and serious illnesses, but some of those are vulnerable people who might have needed extra help to get jabbed. One of the most frustrating parts of M.E is having to fight for services constantly. There are people with M.E who are bedbound, housebound and unable to travel but are not seen as requiring a home visit for vaccination.

Either vaccinated or unvaccinated, covid is still a risk that affects many with chronic illness. Also, the country may be opening for most people, but many chronic illness sufferers remain restricted. The lockdown may be a distant memory for some but many of those with chronic illness live in lockdown permanently. I thought the lockdowns would raise awareness for those who are housebound because of chronic illness, that normal people would get a glimpse into our lives. It had this affect on some people but not enough. It’s frustrating to hear people who look forward to the end of restrictions because I genuinely feel that some of those restrictions helped me. For example, the wearing of masks is something I think should be positive, I hate wearing one because it’s uncomfortable, but I haven’t caught a single cold since wearing one. A focus on hygiene and hand washing is something that should still be supported. How many viruses and infections affecting vulnerable people could have been prevented through a simple handwash!

There was a huge focus on those who were deemed clinically vulnerable or high risk during the height of the pandemic, as deaths skyrocketed. Vulnerable people were offered priority in the vaccination rollout and eligible for priority grocery slots with supermarkets. But that focus has shifted greatly as the pandemic has worn on and it feels like those vulnerable people have been forgotten once again. It’s all too easy for government to forget those with chronic illness and disability, they return to ignorance because it’s less effort.

The end of restrictions means a return to normality for a lot of people, but for those with chronic illness or disability there is no let up or relief. Covid still poses a risk for the vulnerable; the end of mask wearing, shortened isolation periods and the tendency to get tested less poses a risk for those who remain vulnerable. People are moving on and excited for unrestricted life but in that excitement, they forgot that there are still people who will suffer serious complications from catching covid. Covid hasn’t disappeared, it’s not been beaten and that’s still a message which should be sent out by government. There is still a risk of more mutations and variants which may devastate society and there are still people who remain vulnerable to should be protected and supported.

I encourage moving on and getting back to a sense of normal. We all want to forget this pandemic and leave it in the past; but it can’t just be pasted over and overlooked. There are still many deaths, there are still seriously ill people in intensive care. Hospitals are still overwhelmed, and NHS services feel this strain. There are still chronically ill and vulnerable people who are too scared to leave the house and risk catching covid. There are still vulnerable people who need to be protected. I just hope that people remember this when they discard their masks or give up testing themselves when they get symptoms. Keep in mind that you could still pass covid on to someone vulnerable, who could be devastated by the illness. Remain vigilant and continue to practice good hygiene like using sanitiser and handwashing. They might seem like small, annoying tasks but they could prevent you passing viruses and illnesses onto those more vulnerable.

Anxiety and The Age of Phone Appointments

January 17, 2022 by SleepyBookworm94 ♥ 0 Leave a Comment

A major misunderstanding about social anxiety is that it only manifests when a sufferer is physically around other people. People associate it with being in crowds or socialising in busy places; being physically in contact with other people. But that’s not the case; in this technology-based society, social anxiety can also manifest when communicating through a video call, a phone call or even email. Over the past 2 years, the covid pandemic has had a major impact on people’s mental health and as a social anxiety sufferer, I have felt that impact.

I believe I’ve always had social anxiety in some form, even at a young age I wasn’t comfortable being around my peers. There was the typical feeling of ‘not fitting in’ that a lot of children and teenagers feel; but for me it was harder to ignore. I didn’t enjoy meeting my friends or being away from home, I made excuses to get out of sleepovers because I was afraid of that prolonged socialisation. Although I had friends, I didn’t feel comfortable with them. I’m 28 now and I’ve experienced a sort of rollercoaster effect with my social anxiety; at times it’s been manageable and in the background, other times it’s been a daily struggle to communicate with people. One aspect of my social anxiety that has stayed constant however, is the anxiety surrounding phone calls.

Phone anxiety is a very misunderstood aspect of social anxiety. It seems to most people; to be a stupid reaction. I’ve often been labelled as rude for not answering phone calls and not wanting to speak on the phone, even to family. However, if people saw the state, I get myself into when faced with a phone call, it would be evident that it’s not just an excuse to ignore people. If I receive a call or must make a call, I immediately break out into nervous sweats, my heart rate jumps up and I begin hyperventilating, I start shaking and become lightheaded. The worst part is I cry uncontrollably which is completely out of character for me, I rarely cry. I end up becoming a hyperventilating and crying mess and I can’t get my words out at all. It’s one of the most debilitating things I’ve ever dealt with.

Unfortunately, the covid pandemic has had a big impact on this aspect of my mental health. With most professional agencies and health services moving to phone appointments; it’s been tough to cope with. As an M.E sufferer, I have more health appointments than most people and this new reliance on phone appointments has been a constant struggle for me. People often assume that with social anxiety, I’d prefer talking over the phone and not physically having to see someone but it’s exactly the opposite. My social anxiety is easier to manage when seeing someone in person, one to one. Over the phone I cannot cope, something about not being able to see the person I’m talking to or read their facial expressions sends my brain into meltdown. Video calls are much the same, despite being able to see someone on screen; it’s not the same and I can’t stand myself being on camera. One of the worst parts of this whole experience is how unsensitive some people are towards this anxiety. I remember having to ring my bank because of an issue and when I said, “I find it difficult to talk over the phone, could someone speak on my behalf”, I was met by “What do you mean you can’t speak over the phone, what’s wrong with you?”. I felt so embarrassed and stupid and it’s a comment that doesn’t leave someone with anxiety; I hate that people speak without thinking about how their words might affect someone else. As someone who can’t work because of illness, I claim PIP and my review came up last year. Due to the pandemic I received an appointment for a phone assessment. The response I received when my Mum rang to explain my anxiety issues, was terrible. There was no compassion, no understanding and these are people who are supposed to support and be accepting of mental illness and physical disability. It was such a distressing experience and I truly believe that those working for the benefits system should have more training in how to speak to those with mental health issues. Every individual applying for benefits should be treated with respect and compassion, it’s a basic requirement, it’s human decency.

Luckily there are certain organisations and providers that allow an appointee to be named who speaks on my behalf. It’s something that a lot of people with anxiety aren’t made aware of. GP Surgeries usually have a form which can be filled in which allows a named person to speak to your behalf and have access to your health records, which means they can ring for test results and discuss your medications etc. There is also a process to name an appointee for dealings with the benefit system, it’s something that a lot of people applying for disability benefits are unaware of. You can appoint a person to take charge over your dealings with the benefits system, it’s usually used when someone isn’t capable of managing their own finance etc. But it can also be used by those who suffer with severe mental health problems which limit their capability to communicate. It also makes it possible for someone to speak on your behalf in the PIP process. I knew I wouldn’t be able to do my PIP phone assessment because of my anxiety but I was repeatedly told I’d have to speak over the phone or my application for benefits would be denied. It was only due to one genuinely considerate phone operator that my Mum was made aware of the fact she could become my appointee and therefore take my place in the phone assessment. I will paste a link to this information below and I urge anyone struggling with severe anxiety to take a look if applying for benefits.

Become an appointee for someone claiming benefits – GOV.UK (www.gov.uk)

I wish more people understood social anxiety and could recognise that it is a debilitating mental illness. It’s not just ‘being antisocial’ or ‘rude’. And with people who suffer with phone anxiety in particular; this pandemic has made it a lot harder for us to communicate. There needs to be more consideration for this, especially at GP surgeries with so many appointments still being online or over the phone. Patients with mental health issues should be offered a face-to-face appointment when needed, especially when their mental illness prevents them communicating effectively over the phone or online.

M.E and Medical Test Results

January 4, 2022 by SleepyBookworm94 ♥ 0 Leave a Comment

M.E is a very under researched neurological disease; because there is no test to diagnose M.E, it’s a condition that’s diagnosed by ruling out everything else with matching symptoms. I’ve undergone countless medical test; ultrasounds, MRI scans, blood tests, urine tests, ECGs and so on. Most of these were done when I first became ill with M.E and were used to rule out other serious conditions with similar symptoms.

But medical tests for someone with M.E can produce a lot of mixed feelings and anguish. I found all these tests to be emotionally exhausting, because they always came back normal despite all my physical symptoms. Now, tests coming back normal is a good thing, I wouldn’t wish for them to show something terrible or life threatening…but as a person suffering with very debilitating symptoms, to have no answers is frustrating and so disappointing. Suffering with a neurological disease that is very under researched and carries so much negative stigma is difficult; and deep down I’ve always hoped that some test would give me an answer to why I experience these debilitating symptoms. Every test that I have done, I’m hoping for some clue or some reason for this illness. I’m hoping it’s something less else, something that can be easily fixed or cured.

It’s hard to explain to other people, you always get the “well it’s good your tests didn’t show anything” and “why would you want your test results to show something wrong?”. It’s a complex emotional feeling because there is relief when tests come back normal, I don’t want them to find something terrible! But to have no evidence of anything, to have no clue or indication of what’s causing such devastating symptoms is disheartening. It makes me question and doubt myself and my symptoms and it gives other people a reason to doubt and question me. That’s the worst part, I have no evidence to give people, I have no proof that my body is physically unwell. The only thing I have is the daily and constant symptoms that plague my life, unfortunately this isn’t enough for some people.

I think normal test results in people with M.E make it easy for doctors to put it all down to a mental illness. I suffered with major depression for years before I developed M.E and there was always a question of my symptoms being a progression of that mental illness, rather than a physical neurological disease. When a doctor says “your test results all show you’re a physically fit and healthy person” it’s hard not to think it’s all in your head. I was diagnosed by an amazing GP who has given me so much support. But I think diagnosing me with M.E was hard for her because as a doctor she wanted to help me, she wanted to give me answers and solutions. She always commented that she ‘wished she could just cure me and make me better’ and as a doctor, I imagine it’s hard when they are faced with an illness that has no cure or easy fix. I can’t fault my GP in dealing with my M.E; despite it being a complex illness, she never gave up trying to find ways of helping me live life to the full. But I have come across doctors who, when faced with normal test results and no physical proof, just place all the blame on a mental illness, or being unmotivated and lazy. In some ways, they create mental illness in those suffering with M.E by discarding patients’ feelings and experiences, by being ignorant and inconsiderate.

I guess it’s one of the reasons why M.E is labelled as an invisible illness, because often test results do come back normal; with no clues or indicators of physical illness. But my advice to anyone doubting this illness as physical, or anyone suffering with M.E who doubts themselves is; talk to someone with M.E, watch how they live their life. Watch an M.E sufferer struggle to fight through their fatigue, watch them try to cope with chronic pain; watch them struggle to do the most basic things, like wash, get dressed or make a meal. Watch them lose all their friends because they don’t have the energy to socialise, watch them as they lie bedbound, watching life pass them by through a window. Then tell me this illness isn’t physical. It might be labelled an invisible illness but M.E is very visible to those who actually look.

My Puppy and M.E

December 10, 2021 by SleepyBookworm94 ♥ 1 Comment

All my life I have lived with pets. I grew up with dogs, hamsters, birds, a bunny and ferrets. When I was in my teens I got into keeping rats and this has been a passion of mine ever since. Then I adopted a cat and completed my pet family. My pets are a huge part of my life and they’ve made coping with M.E easier. They provide constant companionship and this is appreciated when I’m housebound for long periods of time. My mental health and motivation is made stronger with them in my life.

This summer I decided I wanted to add a puppy to my life. It was something I had to think on; my M.E fluctuates and there are days I can barely get out of bed. But I’m in a stronger place now than a few years ago, I know better how to pace myself and when to stop pushing myself. I’ve learned to listen to my body more and rest when needed. I decided a puppy would be a new challenge…and it has been in ways I never even thought about!

A few months ago I was approached by a rescue centre who had a 15 week old Maltese puppy. A toy breed was not something I originally wanted, but when I heard this puppy’s story I was committed. This 15 week old pup had been bred in a puppy farm abroad, separated from his mother at 4 weeks; concealed in a lorry with his siblings and smuggled all the way from Romania to the UK border where authorities discovered him. Some of his siblings had died on the journey but he and 2 other puppies had survived. I’m a huge animal advocate and there is no way I could not give this little puppy a better life. So I adopted him after his quarantine, named him Gizmo and it has been a rewarding but challenging experience so far!

I knew a puppy would mean getting up early to let him out but I never thought it would be such a difficult job for someone with M.E. I take regular medication at night before bed to manage pain as it often stops me sleeping. My pain has always been worse at night and restless legs have been a huge problem for me. Taking medication before bed allows me to sleep easier and with less pain and discomfort. But, it makes early mornings extremely difficult. The medication makes me very groggy when waking up, my whole body feels like its been weighed down and it’s a struggle to get up out of bed quickly. Normally this isn’t so much of a problem because I will just lie in bed until the feeling passes and then I can slowly get out of bed. With M.E it’s important to do things gradually and getting up in the morning is no different. I have to do it in steps, get up and wash, take a break, get dressed, take a break, brush hair and teeth, take a break etc. A puppy with a small bladder has no time for this. Suddenly waking with an alarm, getting up and immediately going outside was a shock to the system. The fact it’s winter makes it ten times worse because one of the worst symptoms of my M.E is not being able to regulate body temperature so I’d go out into the freezing cold but it wouldn’t hit me until later and then my bones would be stiff and sore and I’d be cold despite being inside again. The sudden getting out of bed without waking fully made my fatigue a lot worse. My fatigue is made worse by an alarm going off because I’m not waking naturally; my body isn’t ready to wake up, I’m pushing it to get up and with M.E this has consequences. I managed for a couple of weeks but it quickly became apparent that it was having a negative affect on my energy and fatigue levels. It was really frustrating because I felt like I’d failed at the first hurdle. Luckily my parents are really understanding of my M.E; they are my carers and they always come up with compromises that allow me to handle my symptoms but keep a bit of independence and responsibility. So instead, they began letting Gizmo out in the morning, then he’d come back and sleep with me until I woke naturally. It made things a lot easier, because I was rested when I woke up instead of waking up before I was fully rested.

The early morning was the most challenging part of having Gizmo, I didnt realise how important it was for me to sleep until I was rested enough to wake up naturally. Sleep is of such a low quality for M.E sufferers that we need more than the average person. Getting up with an alarm and getting straight out of bed is difficult with M.E, it isn’t just a case of being lazy or lacking motivation. I was hugely motivated to get up and let Gizmo out, I experienced so much frustration and disappointment when I realised I couldn’t manage that. But M.E doesn’t care about how much motivation you have to do something, if the body physically cant cope then you have to accept it; that’s why it’s such a devastating illness. I’ve experienced another issue I never expected when adopting Gizmo. Because he’s such a small breed of dog, Gizmo frequently needs picking up. It took time for him to master going up and down stairs, he can’t get on my bed or the sofa without being picked up, there are times he can’t get over something and like any small animal, he needs help. After a couple of weeks with Gizmo, I started experiencing awful back pain, a constant ache and spasms in my lower back that left me gritting my teeth in pain. Back pain was one of my worst symptoms when I first developed M.E, it took years to learn to manage that pain. It’s a symptom that improved when I started to pace myself, and avoid jobs that involved repeatedly bending; hoovering, lifting heavy things etc. It was something I never considered when adopting a puppy. It took me a while to realise my worsening back pain was due to the repeated motion of bending to pick Gizmo up. He’s a tiny dog, which means he needs picking up a lot! I’ve managed to find ways around this which has gotten my back pain back to normal levels. I make sure when I pick him up, I don’t bend but squat so I’m using my knees rather than my back. I’ve made steps, so he can get on and off the bed and sofa without needing me to lift him.

Since adopting Gizmo, my fatigue levels have been affected. I’m having to get up and move about more, I’m having to remember to feed him three times a day and put time into training him. But over the weeks it’s gotten easier. Animals are amazing, they are so much smarter than we give them credit for. I’m shocked at how Gizmo has adapted to my illness. When it’s time for bed, he goes into his bed and sleeps through the night until my parents get him up and let him out. He then comes back to bed and sleeps until I’m ready to wake up, it’s like he knows I need that extra time to sleep. I often need to sleep for a few hours during the day because of my fatigue and he’s adapted to his, he comes to bed with me and sleeps at the same time. He’s learned that when I’m awake, it’s playtime and it’s time to be active and hyper but when we go to my bedroom, it’s rest time. If I’m having a particularly bad day where I need to stay in bed then he knows that he has to spend more of the day with my parents. Over the weeks, we’ve established a routine and slowly my fatigue levels are becoming more stable. It’s been harder than I expected, but I wouldn’t change it. It’s tested me and in a way, made me more aware of my limits and what factors can trigger my symptoms to flare up. It’s been a hugely rewarding experience despite the obstacles though, I’ve got a new little friend. Gizmo had a rough start to life and I can’t wait to give him a life filled with love and attention. I’ve already watched his confidence and his personality grow, and I know he’s going to make a great little companion. He’s already boosted my mental health enormously, and it makes living with chronic illness that little less lonely.

The Sleepy Bookworm

Tag: M.E