Month: Jun 2020

Anxiety · Chronic Fatigue Syndrome · Chronic Illness · Fibromyalgia · Mental Health · PCOS · Symptoms · UCTD

Symptom of the Week – Mental Health

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Mental health problems are more prevalent in today’s society than ever before and although it still has some way to go, more people are understanding the various mental health issues that exist and the different ways in which they can seek help.

With regards to chronic illness people may find they have developed mental health problems as a result of their condition/s or actually had mental health issues before becoming ill which have worsened as a result. Mental health has many different facets but the ones most related to chronic illness patients are anxiety and depression. According to the NHS website anxiety is a feeling of unease such as worry or fear that can be mild or severe. This can manifest itself in various ways including panic disorders, obsessive compulsive disorder (OCD), social anxiety disorder or phobias to name a few. Depression is described as feeling persistently sad for weeks or months rather than just a few days. With both these mental health conditions there is help available and you can get support to help you cope with how you are feeling.

My own experience

I have lived with mental health issues for a very long time – before I became ill and after. Before illness I suffered with anxiety including OCD and social anxiety and felt anxious about most situations. Once I became ill my anxiety continued and at times became worse as I worried all the time about becoming ill and catching things from others which would make my symptoms worse or that other people in my family would become ill and I would be unable to look after them. Rationally I knew these thoughts were not helpful but I felt a loss of control over myself after becoming ill and that was the real reason for my anxiety. Whilst waiting for my various diagnoses I felt my issues with mental health were used as a way by others to discredit my symptoms almost like it was all in my head and for a while I started to believe that maybe it was but how wrong they all were. Since diagnosis for my various conditions I have struggled mentally with coming to terms with my new life which you can read about in my blog post Mental Health and Chronic Illness here.

Counselling was a huge source of help for me as it helped me to come to terms with who I am now and whilst I am not the person I was before my illnesses that it is ok. Letting go of my past was something I was unable to do for a long time (and is still a daily challenge) but realising I can move forward whilst in a different way is really rewarding.

My tips for Mental Health – as always check with your doctor before trying any new tips or ideas.

  • Speak to your doctor – If you are suffering with your mental health for whatever reason do not suffer alone. Speaking to your GP is the first step to getting better and just by having someone listen to you is a great sense of comfort.
  • Find a counselling service – Finding a counselling service through your GP or independently can be one of the best things you can do. Again having the chance to speak to someone takes those negative thoughts out of your head and helps you to see things more clearly. With the current climate you don’t even need to visit someone face to face you can have telephone counselling or facetime all from the comfort of your own home. Don’t want to speak to a stranger? Then speak to a friend or family member as talking is extremely therapeutic.
  • Learn about CBT – CBT (Cognitive Behavioural Therapy) is a great tool to have when it comes to negative thinking as it teaches you how you thoughts influence your feelings, your body and your behaviour. Change your thoughts you change your world.
  • Accept who you are – My battle with mental health has mostly focused on my inability to accept myself for who I am but doing just that – accepting yourself can make you see life in a whole different light. Your life may not be how you want it to be but it’s still YOUR life and that makes it pretty damn special. Some days will be harder than others – that’s life with a chronic condition but tomorrows a new day and a chance for something better.

For more information regarding mental health issues in relation to chronic illness or otherwise check out organisations such as Mind, Anxiety UK or Rethink Mental Illness all of which are great sources of information.

Next week’s symptom: IBS

Chronic Fatigue Syndrome · Chronic Illness · Fibromyalgia · PCOS

Feelings of Loss

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When I decided to write this blog I wanted to bring something to my corner of the blogging world that I had struggled to find when I was first diagnosed many years ago. As much as I wanted to talk about tips and practical things to try I also wanted to talk about the feelings and emotions you experience when you have a chronic illness which I didn’t think for one minute I would feel. The biggest being the feeling of loss.

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Naively, stupidly or just through lack of understanding I didn’t think an illness could make you feel loss not only in possessions or money but through yourself as a person. I also thought because I was so young when I was diagnosed how could I miss something I never had but that is just it; something I never had. This was therefore a loss of my future self, the one I had envisioned alongside the ‘what ifs’ and the maybes.

When I left my job I felt an overwhelming sense of what now and couldn’t get my head around where to go from there; what my purpose was. I also couldn’t handle accepting my illnesses and the fact my life had to change in a way I did not want it to. It was feeling like this that lead me to seek out a counselling service as I felt like I couldn’t truly express myself to anyone else without upsetting them or making them feel uncomfortable so a stranger was just what I needed. Counselling was hands down one of the best things I have done since becoming unwell as it allowed me to express myself without apology be that sadness or anger, self-indulge about my situation and actually get everything going on in my brain out there. I ended up having counselling for just over a year as I will admit it took me a long time to see the bigger picture and break down those rigid belief systems I had in my life.

In later blog posts I am going to discuss specific events in my life that chronic illness has made me experience loss including work, relationships and parenting so I shall leave those topics for now and focus on the loss of the person you once were.

Feeling you have lost yourself is hard for anyone regardless of your situation but knowing you cant go back to being that person because it would be detrimental to your health can be soul destroying. I don’t necessarily mean personality traits (unless you are someone who doesn’t stop to breathe) but the way you look at life and deal with it. There is definitely some truth in the saying ‘the definition of insanity is doing the same thing over again and expecting different results’ – you think sticking to your old ways is going to change everything when really it isn’t. If it was making you feel crap before chances are it still will. Changing your thought processes is one of the best ways to challenge this behaviour and understanding you have to make yourself if not ‘the’ then one of the top priorities in your life is another; it is not selfish it is sensible.

As strange as this may seem loosing who you were and who you thought you would be can lead you to feelings of grief. Loss is loss at the end of the day wherever it be a family member, a pet, a job or of a side of you that is no longer achievable. There is no rigid sequence but you may experience feelings of denial, anger, sadness, bargaining before reaching acceptance. Acceptance is hard but once you reach it (regardless of how long it takes – I am only just getting there after 7 years) it will make everything that much easier.

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All these feelings are normal to feel you are not on your own feeling them. It hurts and it doesn’t make you weak admitting that. When the time is right for you, you will begin to see the excitement in becoming the new you with your new way of thinking and priorities. It can become interesting thinking about how you are now going to live your life (horrible illness and symptoms aside) and what your new goals are going to be. Embrace it this is a brand new you and you are amazing!

Chronic Fatigue Syndrome · Chronic Illness · Fibromyalgia · Symptoms

Symptom of the Week – Dizziness

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Dizziness can be a result of many different factors from being dehydrated to having low sugars or low blood pressure. Dizziness can be described in a number of different ways including:

  • Feeling the room is moving/spinning (Vertigo)
  • Feeling giddy
  • Feeling lightheaded
  • Feeling off balance
  • Feeling like jelly

My own experience

All of the above feelings of dizziness I have experienced at some point and none of them are particularly pleasant. I have low blood pressure therefore I find moving too quickly or getting up too fast a problem which can cause issues if I ever try to exercise. I also experiences bouts of dizziness alongside headaches which can sometimes be accompanied with nausea. I often find I get flare ups of dizziness and it can made worse if I am tired. In particularly bad flare ups I find I cannot read books/words or look at a computer screen because it makes me feel worse. Like fatigue dizziness is a difficult symptom to live with as it can stop me being able to function.

Tips for Dizziness: As always check with your doctor before trying any new tips or ideas.

  • Drink plenty of water – Dehydration can contribute to particular forms of dizziness so it is always worth making sure you are regularly drinking. Try little and often if you find drinking large amounts difficult.
  • Sit down – If you find yourself in a situation where dizziness has occurred if you are able to sit or lie down until it passes and then get up again slowly.
  • Think about your movements – If you are like me and have issues with postural dizziness then you need to think about your movements and make them slow and careful e.g. standing up slowly, not rushing about, taking breaks when walking.
  • Get plenty of rest – The worst thing you can do with dizziness is overexert yourself and push yourself too much. Fatigue and tiredness will contribute to headaches and/or dizziness so make sure you get enough sleep and rest.
  • Speak to your doctor – If you find that nothing is helping your dizziness or it appears to have come out nowhere you should go and see your doctor. Dizziness can be caused by many different reasons that may or may not be related to your chronic illness therefore it is always worth getting it checked out.

Next week’s symptom: Mental Health

Anxiety · Chronic Illness · Mental Health · OCD · Stress · Stress Management

Anxiety Episode – Germs

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I acted quickly, too quickly in fact which is strange for a procrastinator like me and now all I felt was panic, panic at what I had done and panic for what was going to happen and in this panic I could feel my grip on reality beginning to slip away.

I have experienced mental health issues in the form of anxiety for most of my life mainly in the form of generalised anxiety with a pinch of social anxiety thrown in the mix for good measure. I have a gift for catastrophising letting one thought move to another and then another until all of a sudden I have convinced myself I am responsible for everyone else. Once I went to the cinema and convinced myself I hadn’t turned off the tap in the bathroom sink, suddenly I had thoughts of the bathroom flooding, then the rest of the flat and being responsible for my family losing our home and our possessions. I couldn’t rest all through the film, all I could feel was my anxiety – when I got home the tap was turned off after all.

It wasn’t until I developed multiple chronic illnesses that my anxiety surrounding health really began. Having multiple illnesses that are debilitating is just that – debilitating with constant episodes of fatigue, dizziness, digestive issues etc. consuming your everyday life; the thought of catching other illnesses simply makes you paranoid. I was ill enough already I didn’t need anything else to add to the pile as even a simple cold could make me feel awful, but worse still trigger my other symptoms. Germs in a nutshell scare me, so much so that I would have to evacuate an area if someone sneezed, all for fear of catching something. Hand sanitiser has been an essential buy for me way before recent times as I would have to sanitise after every interaction I had, just in case I touched something then touched my mouth, eyes, nose, face, in fact anywhere on my body.

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It was one Saturday afternoon that my panic set in; the day had been rather uneventful thus far and my mum had just left for work. It was very much early days with regards to the news of covid-19 but even these first mentions of the virus were making me nervous. So much so the second my mum left the house I decided I needed to disinfect certain areas in the home. Going into the bathroom I picked up some antibacterial wipes and peeled off the covering only for it to fall off and land in the toilet. My first initial thought was to flush it away but then my worry brain took over, anxious it would block the toilet. I tried using different objects to scoop it out but to no avail as the sticky bit of the cover had stuck to the bottom of the pan. It was then that I acted quickly like I said too quickly and I grabbed a rubber glove to put on and fish the covering out myself.

Now to the non-health anxiety eye that might not seem like a big issue or in fact an issue full stop and in fact may have been standard protocol for some people but the second I recovered the item and took the glove off, I went into a complete meltdown. All I could think was what had I done? What if I’ve caught something from the toilet or the toilet water? So I scrubbed and I scrubbed my hands even though the one hadn’t even gone in and the other had been fully covered. Then I hand sanitised, paced round my living room worrying myself sick and started the process again of scrub hands, sanitise over and over convinced that some fleck of a germ had invaded my body. All of a sudden I had the notion that if it was on my skin, it could be on my clothes too so I had to take all my clothes off and wash them right down to my underwear. After showering and putting on clean clothes I was paranoid that maybe my hair had been contaminated so had to wash it again even though I had already washed it that morning. The panic sent me into a frenzy of not only cleaning myself but rooms of the house just in case I had transferred germs from one place to another. I was catastrophising at the highest level believing my actions had contaminated the house which would make me ill and then put my mum at risk., I couldn’t think straight. I felt physically sick. I carried on this behaviour for five hours until my hands were red raw and sore and my mum returned home. Seeing her I broke down sobbing unable to take the mental anguish of what I had put myself through but speaking to her about my actions brought me to my senses and I realised how irrational my thinking had become.

Whilst I’d had episodes of overthinking, this was on one the first times I realised the damage my own mind could cause, and how much I struggled with stressful situations. I had accessed mental health services in the past alongside counselling and after reviewing my notes it opened my eyes to the concept of CBT and how your thoughts affect your behaviour and feelings. Although this is hard at times CBT has helped me to get hold of my thoughts before they get out of control. I have also learnt to manage my stress more by focusing on the things I can control and not the things I cant. Most of all I have learnt to be kinder to myself and accept me for me, because whilst my mental health is a struggle at times, I am trying my best which is all any of us can do.

Chronic Fatigue Syndrome · Chronic Illness · Fibromyalgia · PCOS · Symptoms

Symptom of the Week – Fatigue

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Fatigue, fatigue, fatigue! Where do we start with you? Fatigue is categorically one of the biggest challenges a chronic condition warrior has to face. Fatigue is an all consuming physical and mental exhaustion that takes over not only your body but also your mind. Many healthy people will use the term fatigue to describe tiredness but fatigue is more than that as it interferes with your daily life and affects your ability to complete everyday tasks successfully.

To read more on my feelings towards fatigue and other people’s perceptions read my post titled I’m not Lazy, I’m Fatigued here.

My own experience

Fatigue for me is my biggest enemy this is because it is the one symptom I feel I cant get a handle on at times no matter how hard I try. The one symptom that robs me of achieving what I want to achieve and being who I want to be. I find it can be a combination of many things that make my fatigue worse from overdoing it, to getting too much sleep, not enough sleep, having too many sensory things around me, having to concentrate for too long and even having conversations with others.

I have tried many different things to help with my fatigue and whilst I have never found that one golden thing that solves it, I have found some little things that have made a difference of sorts.

Tips for managing fatigue – Remember to always check with your doctor before trying any new tips.

  • Pacing – Trust me if there is only thing you take away from my blog – pacing should be it. For more information on what pacing is and ideas on how to do it check out my pacing post here.
  • Establishing a bedtime routine with good sleep hygiene – Getting your body into a routine before bedtime will allow your body to anticipate sleep at the times you need it to. Good sleep hygiene which are essentially good sleep habits include making your sleeping space as comfortable as possible by looking at the temperature in the room, the bedding you use and the colour of your décor to make it a relaxing space. Going to bed the same time and getting up the same time regardless of what has gone on throughout the day or night. Avoiding caffeine, alcohol and nicotine several hours before bedtime as they are simulants which can interfere with sleep. Avoiding clock watching as this will only remind you that you are not asleep yet so instead get up and go back to bed when you are sleepy.
  • Relaxation periods – Find a period of the day in which you can have time that is just for yourself to do something that you enjoy. This doesn’t mean you have to sit and meditate (although this is great if you can) it can be as simple as reading a book or taking a bath, the key is it just needs to be something you find relaxing. By introducing a relaxation period in your day, you are giving your body and mind a break which with fatigue it desperately needs.
  • Drink more water – I have to say I am guilty of not doing this enough at times due to stomach issues but you need to try to keep hydrated as much as possible. Also look at your diet and try to eliminate anything that causes a dip in energy because this will only contribute to your fatigue levels.

Sadly there is no quick fix where fatigue is concerned just trial and error and whilst something may help one day it may not on another . There is no doubt fatigue is one of the most difficult symptoms of chronic illness to manage but hopefully by reading this article alongside some of my other fatigue articles you will find tips and tricks that you can try.

Next week’s symptom: Dizziness

Anxiety · Chronic Illness · Fibromyalgia · Mental Health · Stress

Mental Health and Chronic Illness

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Anxiety is a little bit like writing a piece for an assignment – the more you throw in the mix the more complicated it gets. I have lived with anxiety for the majority of my life starting in childhood and bouncing along in the background into my 30s. I have what you would define as generalised anxiety disorder so many things in my life have caused me anxiety over the years. Such things include interacting with others, being looked at (not ideal when it comes to school /workplace and giving presentations – you can read my anxiety episode regarding presentations here), germs and just an overwhelming fear of new environments and new experiences.

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As well as living with mental health issues for a big part of my life, I also have Tourette Syndrome and it was my mid-twenties when I noticed the first signs and symptoms of chronic illness. Of course to begin with I believed it was all in my head because that’s what negative mental health does it makes you doubt yourself. However as my symptoms increased and the intensity of them became so unbearable I struggled to hold down my job, I knew something needed to be done. It took me many years to finally get a diagnosis of Fibromyalgia and Chronic Fatigue Syndrome and several years later to an additional diagnosis of Polycystic Ovary Syndrome (PCOS). My physical health was in tatters with endless bouts of fatigue, digestion problems, headaches and dizzy spells – to name a few (I actually have in excess of twenty different symptoms) but I wouldn’t have guessed that it was my mental health that would take an equally big hit and create a humungous wall to scale.

This particular article isn’t to discuss the many physical challenges of chronic illness (and trust me there are more than one articles worth to cover) but the agonising mental battle that comes with it. I spent so long fighting to get diagnosed and not only that fighting to get people to believe there was something wrong with me, that I honestly believed once my illnesses were identified I would feel better, happier and more at peace but that was sadly not the case.

After diagnosis I still had the constant battle of people not believing there was anything wrong with me but it was the battle I was having internally with myself that was the biggest foe. Whilst realising there was no cure for my chronic illness was horrendous, the realisation my life would never be the same again was gut wrenching. My chronic illnesses had robbed me of my career, my independence and life as I knew it but more than that they had robbed me of my future. Making plans for the distant future were difficult but so were making plans for the following day as I could never predict how my body would respond from one day to the next. Mentally I was a mess, constantly beating myself up about my limitations, hating my body for letting me down and torturing myself of reminders of the life I could have had if I hadn’t become ill. My anxiety surrounding health got worse as I would obsess over getting ill and feeling worse than I already did and the future filled me with nothing but impending doom. I also found myself comparing my life to everybody else my age who were having amazing careers, moving into their own places, getting married and having children all whilst I had none of those things and as a result I felt dejected, useless and nothing short of a failure. All I wanted to do was separate myself from people because the pain was too much to bear.

Whilst I had spent parts of this time on antidepressants to curb my anxiety, I also attended anxiety and depression workshops and 1-1 counselling. It was here that I learnt about the world of CBT – Cognitive Behavioural Therapy and how much your thoughts have a knock on effect on your feelings and behaviour. This combined with being able to talk to someone about how I truly felt about my illnesses and my future slowly but surely started to clear my cloudy mind. So much so that in time I was able to come off my antidepressants and learn to face my anxiety head on.

The more I have learnt to clear my mind the easier it has become to accept my situation and as a result my mental health. My physical health will not change but my mental health has because I have learnt to alter how I think and become my own friend and not my foe. My chronic illnesses are not my fault, I am not to blame. I cannot have my old life but then again I am not the same person I was back then. Does the future scare me? Sure it still does but nowadays I try to take each day as it comes rather than getting caught up in the why, what and when. The biggest thing I have learnt is to stop comparing myself to others because we are all different and whilst they may be ahead of me in this minefield of life, we are all on different paths and I am just in the lane of the tortoise right now but in a lane nonetheless. By changing my thoughts it has given me new hope for the future that I never had before and for that I am grateful.

With regards to my anxiety, I still experience bouts of nervousness and worry and with these current trying times it is hard not to. However I have learnt that feelings of anxiety pass and whilst in that moment it feels like the worst thing in the world, it does disappear and you do come out the other side. For me recovery from mental health problems isn’t about being cured, never to experience anxiety or low mood again, it is about accepting who you are and being ok with that. By accepting me for me and the life I have, I now have the strength to face how I am feeling and know I will come out the other side stronger than before.

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My top 3 tips for keeping a healthy mind when dealing with chronic illness;

  • Don’t compare yourself to others – Comparing yourself will only lead to you blaming yourself. When dealing with chronic illness you need all the strength you can get so be your number one advocate not your number one opponent.
  • Change your thoughts – Just be altering your thoughts through a technique such as CBT your whole concept of a scenario can change e.g. changing ‘I have no future’ to ‘I have an altered future’ can install a feeling of hope rather than doom.
  • Be kind to yourself– Chronic illness is a random beast at the best of times and you cannot predict one day to the next so when things don’t turn out the way you planned don’t beat yourself up over it. It is out of your hands and not your fault – so remember that!
Chronic Fatigue Syndrome · Chronic Illness · Fibromyalgia · Symptoms

Symptom of the Week – Muscle Weakness/Stiffness

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To be more accurate maybe this week I should have called this symptoms of the week because I am focusing on two symptoms that interlink with each other – muscle weakness and muscle stiffness.

Muscle weakness can develop in all muscle related areas of the body. It can vary from being physically weak and having no body strength to pick things up to having no physical energy to keep going.

Muscle stiffness is quite simply having stiff muscles. This can be triggered by multiple things such as little or too much exercise, lying down for long periods, inactivity and the weather.

My own experience

When I am fatigued mentally that will generally translate to physical fatigue and weakness and therefore a lack of physical energy. Day to day I have no body strength whatsoever and I struggle immensely with picking things up as I have no upper body strength for someone of my age. I therefore need assistance with cooking and cannot help out with housework because I find everything too heavy for my arms.

In terms of stiffness I would describe it as one of my top bug bares as it tends to be one of the things that triggers my pain. I often feel like someone of 90 rather than in my 30s especially in the morning when trying to get out of bed and don’t get me started on the dreaded winter months. Although saying that this year the warm weather has also impacted my stiffness and I often refer to myself as needing to be cracked into place like a contortionist because my body will not play ball.

Tips for muscle weakness/stiffness: Remember never try any new tip without checking with your doctor first.

  • Exercise – Exercise seems to be the best form of treatment for muscle weakness as it slowly builds up your muscle strength. Gentle exercises such as yoga and pilates are probably the most effective as long as you move slowly and do not push yourself. The key is to build up slowly if possible.
  • Stretching – Stretching is definitely an effective method to relieving stiffness. Having a good stretch when you first get out of bed and/or when you have been sat for a while is a great way of loosening up. General stretching works alongside yoga techniques including chair yoga for people unable to get on the ground.
  • Pain Management Techniques – You may find some tips that are used for pain management are helpful with muscle issues. For ideas check out my symptom of the week post on pain here.

Next week’s symptom: Fatigue

'Living with' Series · Tourette Syndrome

Living with… Tourette’s

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This post is the start of my new ‘Living with..’ series. This series will discuss what it is like to live with each of my conditions and first up we have Tourette Syndrome.

People are surprised when I say I have Tourette’s, sometimes shocked and at times horrified. I don’t look like I have Tourette’s but what is a person with Tourette’s supposed to look like? Are we supposed to walk around with a big billboard round our necks and a flashing arrow above our heads saying ‘I have Tourette’s look at me.’ The truth is I don’t want people to look at me like an exotic animal in a zoo; I want people to see me and not my condition.

My tics

My tics consist of pacing back and forth, arm and leg flailing, facial grimaces, throat clearing, body stiffening and hand twisting and shaking. Whilst I have Tourette’s I can hold in my tics and therefore very rarely do them in public. To do so though is draining, tiring and at times agonising as the beast in my chest fights to get out in times of stress and interestingly in times of pure excitement too.

For the record I do not swear, in the Tourette’s sense anyway and for all of you imagining that’s what I am doing right now I am sorry to disappoint you.

I have had Tourette’s for as long as I can remember but wasn’t diagnosed until I was 18. I am now 32 and have carried it into my adult life. I cant remember life without tics and I cant remember having a full day without needing to tic, it’s part of me, it’s who I am. I cant get away from it because it doesn’t matter where I go or what I do I have emotions and therefore I need to tic. I stand in a busy bus queue feeling anxious – I need to tic, I get frustrated by a rude shopper in an aisle in a shop – I need to tic, I feel happy finding a book I wanted to read in the library – I need to tic, then I get home and I feel excited watching an episode of my favourite tv programme so you guessed it – I need to tic. All day long the sensation in my body is there waiting to get out yet I suppress it. This is until the suppression doesn’t work anymore and I let it out sometimes for hours on end until I get relief before it starts all over again.

I never really noticed the impact Tourette’s has on my body not until I developed other unrelated multiple illnesses and realised how much my tics have an influence on how they operate too. Living with chronic illnesses my body gets extremely fatigued and needs to rest however my tics often make my fatigue worse from the impact ticking can have on my body. My chronic illnesses are also associated with muscle and joint issues again made worse by ticking because my body never fully relaxes and therefore is in a constant state of tension. Simultaneously my chronic illnesses impact my Tourette’s as if I am too unwell to tic effectively to the level I need I cannot eliminate the sensations in my body and I am therefore in a heightened state of unrest.

Living with…Series

What I wish other people knew about Tourette’s

Whilst the physical nature of living with Tourette’s is tiring it can be the emotional side of living with such a condition that can be the hardest to deal with. The hardest being the assumption of others and what they think Tourette’s is.

The one thing I wish people would understand with Tourette’s is that not everybody shouts out and swears, of course there are people that do but the majority actually don’t. I don’t blame others for thinking that because the majority of media coverage focuses on that particular trait, maybe because it is such a unique symptom or maybe for the laughs at others expense who knows. However this isn’t a real enough representation of the Tourette’s community. The amount of times I have had people find out I have Tourette’s and the number one thing they can think to say is ‘so you swear all the time, go on do it now’ like I am some kind of circus performer. The other reaction I get is of embarrassment and exit scanning with people scrambling around for something to say or a way of getting away because all they can think is how it affects them. You’re embarrassed? I’m the one who has it and just to let you know continuing a conversation with me doesn’t mean you are going to catch it, it’s not a virus.

My advice to talking to someone who has Tourette’s or indeed any tic disorder is to just talk. Ask questions if you need to and get a better understanding rather than making assumptions. You may be surprised at what you learn.

Of course there are many, many people out there who are amazing and don’t bat an eyelid after finding out I am a ticker and although they don’t witness my tics they don’t judge me for it either way so for that I am extremely grateful.

What I wish I had known about Tourette’s

My tics are part of me and I honestly don’t think I would be me without them but I haven’t always felt this way. Growing up I felt embarrassed and almost ashamed, worrying what other people would think of me. As a result I learnt to hold my tics in regardless of the impact it had on my body. I wish I had understood back then what I know now and that is how unique having Tourette’s is. Living with such a condition has taught me how much strength I have mentally and emotionally which I can carry with me wherever I go and whatever I do. I am strong, I am determined but most of all I have Tourette Syndrome and am proud.

xx

Other instalments in the series are now available – click the conditions to learn more: PCOS, UCTD, Fibromyalgia, M.E/CFS and Mental Health.

Chronic Illness · Fibromyalgia · PCOS

Symptom of the Week: Pain

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Chronic pain is relentless and can appear anywhere in your body at any given time. Depending on personal circumstances some people find physical activity worsens the pain while others find it helps to alleviate pain.

My own experience – I find my pain alters constantly depending on the weather, how much physical activity I have undertaken that day and how fatigued my body is. Interestingly I have found my body now struggles in warm weather as well as cold wet weather, something it never did before.

In terms of pain related to my PCOS I find I have agonising stomach and back ache which tends to reside on one side more than the other inline with my ovaries.

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Tips for chronic pain: As always please check with your doctor/specialist before trying any new tips or ideas.

  • Osteopathy – This is a good option if money allows as it works to manipulate muscles and joints through stretching, massage and movements. Osteopathy can be gentle on your body as long as you communicate your needs with the clinician beforehand.
  • Massage Therapy – Another option you can get done either professionally or just by having a very generous friend or family member! Do remember if using an untrained person to express the strength of massage you want to avoid injury and opt for a gentle relaxing massage rather than anything too vigorous. If unsure it is better to stick to a professional who will not only able to help with your aches and pains but aid in relaxation too.
  • Exercise – This is definitely a try and try again process as everyone is different and you may find some exercises work better for you than others. The key is not to push yourself, take it slow and steady and don’t overdo it. – I personally am unable to do any form of exercise unless it is a short walk once or twice a week depending on symptoms (Updated 2022). However, this will vary person to person, condition to condition.
  • Heat Pads – Depending on the area of your body that is in pain you may find either warming or cooling pads/compresses helpful. You can now purchase heat pads from any health related shop for both period and back pain. You can use them to stick on the outside of your underwear to soothe the area that is painful. Never put them directly onto your skin as they can get rather hot and may burn. Alternatively using a hot water bottle is a good option when at home to ease any painful areas. Cooling pads can also be used for muscular pain depending on your preference.
  • Speak to your doctor – If your pain is difficult to manage then it is important you consult your doctor/specialist if possible. Make notes before your appointment so you don’t miss any important information you want to say and be open and honest about your pain levels. Your doctor can then advise you of any treatment plans including medications, exercise regimes and support groups.

There is no doubt chronic pain can be overwhelming, constant and just downright draining. However trying to find one or two small tips although may not take your pain away, will still hopefully help you to manage your pain levels more effectively.