Why finding the right therapist is crucial to recovery.

I’ve had CBT 4 times during the past 6 years to try and help manage my depression and social anxiety. I hated it, I dreaded going, used to beg my Mum to cancel because I hate talking, especially about myself.

My first experience with CBT was like hell for me, I was virtually agoraphobic at that point and didn’t leave the house so I used to be forced out by my Mum and dragged to my therapy appointments. I learned pretty quickly that the therapist was only interested in discharging me as soon as possible. It was also like he was sticking to this strict appointment script, reading advice off of a piece of paper. He wasn’t interested in my feelings and I could tell. So I told him what he wanted to hear instead of what was actually going on with me, I faked my depression and anxiety scores so they got better and better until he decided I was fixed and discharged me. It was no surprise that my depression and anxiety was the same and the therapy hadn’t made any difference.

The next two courses of therapy were not even memorable, I was always given this timeline to recovery and if I didn’t keep to this then it was like the therapist got frustrated and annoyed with me. It made me cynical about the whole process and I was convinced that CBT was a load of rubbish. My depression was up and down and my anxiety was constant. Eventually the right medication helped me feel as if there was hope but medication doesn’t solve everything. My anxiety was still ruling my life and I agreed last year to go through another course of CBT but after the last 3 failures, my GP arranged for me to meet a particular high intensity therapist.

I went into my fourth CBT experience with an open mind, I wanted to control my anxiety but I was also worried it would be the same as my previous times. From the beginning, the therapist assured me that although on average it took between 8 and 10 sessions, if it took longer then that was alright and it was about my recovery. She also took an interest in my life and understood my anxiety wasn’t going to just disappear in a matter of weeks. She was the first therapist who was forceful in giving me homework and expecting me to carry it out. Although I didn’t like it, I needed that authority to scare me into doing the activities she wanted. It started off small with me just going on a small 10 minute walk, then it was walking to appointments on my own. The scariest homework was taking trips to the shops which I couldn’t do alone, again she went with small steps and I was allowed to take someone the first couple of times into the shop, then I had to leave them outside while I went in. Eventually I was going on my own.

It wasn’t easy and I had to want to control my anxiety. The gradual build up worked for me. I’m not cured, I still have trouble with certain places and my anxiety gets triggered easily. But I am trying not to let it control my life like before, I push myself to go to the shops even when I would rather stay in the house. Today I’m going out for a meal and although I may have to ask someone to order for me, I’m excited and not dreading it. I don’t think my anxiety will ever go away, it’s too deeply rooted in my brain but I can fight it and I can enjoy social events despite being anxious. That final therapist changed my life and it showed me that recovery is a personal thing, if your therapist isn’t connecting with you then you won’t be motivated to fight.

Sleeping Beauty without the beauty.

This past week, the fatigue has been awful. I’d compare myself to sleeping beauty but there is nothing beautiful about me when I’m sleeping! I’ve been sleeping a good 8 hours at nights, waking up at about 9am and I’m in and out of sleep until around midday when hunger and thirst forces me to get up. Two hours later I’m aching and my head feels foggy and drowsy so I have to go back to bed. I sleep for around 4 more hours, get up to have my evening meal with family and then a couple hours later I’m back in bed watching tv until I fall asleep again.

It all adds up and I’m sleeping about 16 hours+ every day which is mind boggling to me because I didn’t know it was even possible to sleep that much. What’s worse is, I don’t feel better after sleeping; I am fatigued constantly and I am asleep within half an hour of hitting my pillow. I don’t know how I’m still sleeping when I’m sleeping that often.

I’ve got my final assignment to write for Uni and my head is so foggy and sleepy that I can’t concentrate for more that 10 minutes, my eyes start stinging and burning and I have to give up. I’m hoping it’s just a crash and if I rest when my body needs, I will start to feel a bit better eventually. I’m worried it might be a complete relapse to the beginning of my CFS/M.E when I was practically bed bound for months. The heat isn’t helping because that increases my fatigue anyway but the weather is supposed to cool down a bit over the weekend, I’ve never wished for rain more!

Also I apologise for any spelling, punctuation errors in this post, It’s the cotton wool in my brain!

How having a chronic illness makes me a great actress.

“You look well!”

“You look so much better”

“Well, you don’t look like you’re in pain”

I’ve heard all of these things several times. It always shocks me how well I can hide my illness. Invisible illnesses are hard enough, when people are constantly assuming you are healthy and well, when really you feel like hell. When I tell people I have a chronic pain condition, they always look in disbelief because all they see is a 25 year old, young, curvy woman who doesn’t look like she’s in pain. I sometimes wish my pain was physically visible so people could see just how debilitating it is.

The acting comes into practice when I’m in public, or when I’m in front of distant family and friends. I feel like acting healthy is easier than showing what I really feel because my illness is invisible and people judge and doubt when I’m honest, so instead I put on this act. I smile and act polite, I put make-up on to hide how pale and washed out I look. When I’m in pain, I grit my teeth and hold out for as long as I can.

Whenever I see distant family, they always say how much better I look or how much happier I seem and it’s both nice and disappointing. It’s nice because they are happy if they think I’m feeling good and it’s disappointing because I wish they could see through the act to what I am really feeling. I wish they could see the fatigue behind all the make-up and the pain behind my smiles. It’s just easier to pretend I’m doing better and recovering than admit I’m struggling and really wish I was back in bed.

I used to be a terrible liar, I’m an honest and genuine person so it’s baffling to think I’ve grown so good at acting healthy and like I’m recovering. I think people see what they want to see, they don’t want to believe I’m in pain and exhausted so they believe the act I put on.

People I meet who find out I have a chronic illness, prefer to just judge and doubt my illness because they don’t believe what they can’t physically see. It’s frustrating because people believe in things they can’t see all the time, they believe in love and happiness but when it comes to illness they can’t see, all they feel is doubt and suspicion.

Why suicide shouldn’t be a taboo subject.

I hate that suicide is ignored and not discussed more widely. I know what it is to attempt suicide and even now, I feel guilty and ashamed for writing about it. It shouldn’t be like that in this day and age.

I have suffered with depression since I was 18 and it’s been so severe at times that I have turned to suicide. I’ve attempted to kill myself around five times, my last attempt was 2 years ago. When I admit this, I feel anxious and panicky because I’m worried what others will say and think. But I feel that if suicide had been a more talked about subject, if it hadn’t been so hidden and ignored then it may have helped me when I was surrounded by hopelessness and darkness.

People say that suicide is cowardice; that people who take their lives are cowards who took the easy way out. I hate people who say that, I don’t want to glorify or make suicide seem like a good choice but suicide is the opposite of cowardice. Other people will never know how hard it is, how brave you have to be to take that final step. Humans have evolved to suicide so imagine going against all those years of evolution, going against human nature itself and trying to harm yourself.

Having experienced trying to kill myself and surviving, I can look back and re-evaluate my choices. I regret every attempt I made on my own life, I wish I could take it all back. When you have hit rock bottom, you can’t think of anything positive, you think that suicide is the only and best option but it’s not. I was selfish when I attempted to kill myself, I was so focussed on my own misery and pain that I couldn’t think about the pain I would cause by taking that final action. I hurt my family every time I made an attempt, I let them down and I took away their trust in me. Those things, I will never get back. My family and friends will all look at me when I’m feeling down and wonder if I’m going to hurt myself, the trust is gone. The only way I can get it back is by proving I won’t make that choice again, no matter how bad things get.

If people talked about suicide more, if there were more places to talk about it then I think people would see it’s not the right choice to make. Instead, it’s this taboo subject that people ignore or hide and so people feeling depressed and suicidal feel guilty and ashamed, which just adds to that feeling that taking your own life is the only way out.

Suicide is not taking the easy way out, it’s trying to make the pain stop, trying to be free of depression and the struggles that bring us down. It’s a cry for help and as fellow humans, we should acknowledge that cry and do everything we can to help that person. We shouldn’t turn a blind eye, or ignore it because it’s easier to think these things don’t happen. Suicide does happen, it’s increasing and people effected by suicide or suicidal thoughts should not be ignored or swept under the rug.

Shopping in small spaces scares me.

You’d think social anxiety would make it harder to shop in huge, busy supermarkets etc but I find shopping in a small, compact store way more anxiety inducing.

My social anxiety manifested itself in my teen years; it didn’t just appear and there wasn’t a single trigger. It came over me slowly and it’s only now I recognise what it really was. It boiled over when I was 18 and I just refused to leave the house unless necessary. I was scared of everything outside of my house, especially the people. I remember confiding in my boyfriend at the time that I was scared to go out and he laughed it off. He wasn’t being mean or unsympathetic, he just didn’t understand social anxiety was a real thing.

I think that’s the problem with social anxiety, people don’t believe it actually effects people, we just get labelled as anti-social and as loners. But social anxiety is a real thing and it’s a really hard illness to fight.

I find big supermarkets manageable if they aren’t overcrowded and I’m in a good state of mind. However, small stores overwhelm me with fear, it’s something about being the centre of attention in such a small space. I feel closed in and like the people who work there are staring holes into my head. I feel pressured to buy something because if I don’t then the person working there will know and dislike me. It’s a horrible feeling and for that reason, I avoid small stores. I physically can’t go into a small shopping space, my feet feel glued to the floor if I try and I feel sick to the stomach.

People also think those affected with social anxiety have these huge, obvious panic attacks and for a while, I believed that panic attacks were very obvious, I didn’t realise I was experiencing them. I would have panic attacks whenever I was forced to go shopping or out into public, they were triggered by different things but especially by strangers touching me. I person could accidentally brush past me and I would mentally lose it, I would start sweating, I’d begin digging my nails into my skin, my head would spin, I’d start hyperventilating and eventually feel dizzy and sick, at which point I would need to escape.

I’ve always cared a lot what others think of me and social anxiety plays on that, I constantly worry when I’m out that people are judging me, that they are laughing at me and talking about me. In reality I know that’s unlikely and it’s easy to be rational when I’m back at home but in that moment, rational thought doesn’t penetrate the overwhelming panic and anxiety.

I’ve been told I appear quite rude to people when out because I can’t hold a conversation when people talk to me. I hate being thought of that way and I try my hardest to be polite and open but when speaking to someone I don’t know, my mind is working at a mile a minute, pondering all the ways I could embarrass myself and so my mouth just doesn’t work and I end up just smiling or nodding.

I depend a lot on my friends and family to interact with people around me. I find it hard to order in a restaurant or a cafĂ© so I let friends do it for me, which is frustrating because I’d love to be able to pick my own thing and order it. I rely on family to accompany me to the shops and take over for me at the counter. If there is something I need in a small store then I have to send a family member in for me while I wait outside. This all seems odd to a stranger but for me and my support network, it’s normal.

Social anxiety is not just being anti-social or hating big crowds, it’s so much more. At it’s basis, it’s a fear of people which is sad to think about. I want to be able to interact with different people and make new friends and when I’m safe, at home it seems possible. But in the moment, surrounded by strangers it’s an impossibility for me, my brain doesn’t allow me to feel at ease and calm around people.

How a nice day out becomes a nightmare.

With ME/CFS, a nice day out like I’ve had today with family makes me really happy but I know that once it’s all over, I’ll experience a night and day of punishment for my enjoyment.

I had a lovely day today with family, it didn’t involve a lot really, a trip out in the car to feed the ducks with my niece followed by an ice cream in a small village and a trip to a local farm shop. The whole even lasted a few hours and with the sun shining brightly and surrounded my family, it was a happy and enjoyable trip out. But the whole time I’m out, I have the knowledge in the back of my head that I’ll pay for my activity and the longer I’m out, the more I acknowledge this.

I’ve been home now for a few hours and the first feeling I get is of exhaustion and fatigue that forces me to sleep for a couple of hours. Then the pain sets in, I’ve got pain in all my lower joints and muscles; my legs ache terribly. Then my joints begin to stiffen and this is the point where my pain becomes a lot worse, my whole body feels like jelly because I’m extremely fatigued but my joints have seized up and whenever I move slightly, the pinch and stiffening in my hips and knees is awful. My lower back is always the centre of my pain and right now it feels like it’s cramping up and spasming on and off so I can’t just sit comfortably.

My body feels heavy, like its weighted down and my eyes are constantly drifting closed as my brain craves more sleep. It feels like I’m being punished for enjoying a day out, for enjoying activity and it’s a horrible feeling. I want to be active, I love being out in the countryside and experiencing the outdoors but my body doesn’t allow me to enjoy it fully because I know it won’t be enjoyable for long and the next day will be spent suffering the after effects.

Tonight will be the worst, I’ll have to take my Tramadol which leaves me feeling high and knocks me out the next day, but that’s what I need because the next day will feel worse. CFS/ME is a horrible illness, mainly because of the delayed reaction of the body when it’s been active, I may feel fine today and think I’ve escaped the punishment but the next day will always remind me that activity comes at a price. I’ll ache all over, feel like I’ve got the flu, I won’t want to eat or drink; all I’ll want to do is sleep and a lot of the time, all that can be done is to try and sleep through the pain and the fatigue.

It’s sad that a lovely day out has to turn into a horrible experience, I feel like I should regret my activity but I never do because the moments I can get out into the country and enjoy the fresh air, sun and smells is worth it. I know I might have to spend the next two days in my stuffy bedroom, in pain and wishing for it to end but I’ll never regret what made me feel that way.

Side effects may include…

Chronic illness often brings with it a whole host of medications to try and control symptoms but what happens when these medications have more side effects than helpful qualities. I wanted to give a brief history of my experience with medications and their side effects to show how much balance is needed to find something that works better than it gives side effects.

I’ve been on anti-depressants since I was 18 years old (I’m 25 now) and a lot of them worked for a period of time and then it was like my body got used to them and stopped taking notice. For me, the worst one was Citalopram, the side effects for that medication took over any good it was doing me. It gave me disturbing dreams, which happens with a lot of anti-depressants I’ve been on but this medication made the dreams so vivid and horrible that I was struggling to sleep and I was dreading when night came around. This medication also made me feel physically ill, I was nauseous and dizzy a lot of the time.

I finally found an anti-depressant that works for me which is Venlafaxine and I’ve been taking this for a few years now and the good thing is, my mental health has improved. I don’t notice many side effects with this medication other than the excessive sweating which plagues my life. As I explained in my last post, Fibro/CFS gives me very poor temperature control so the excessive sweating which comes with this medication makes that symptom a lot worse. It came down to weighing it up and for me, my mental health is way more important than some sweating. People may stare when I go out and I’m struggling to adapt to the temperature, and I’m covered in a thick sheen of sweat but my depression is under control for now and that’s what matters to me.

For a while I took Codeine to help with the pain symptoms of Fibro/CFS and I took this for longer than I should have. To begin with, it helped numb my pain a bit and it had the benefit of helping me sleep at night. The main side effect I had with this one was addiction. After a while it stopped effecting my pain at all so I increased the dose and then I began taking it more often. It soon became a habit and I was taking it just because I felt I needed it, rather than taking it for the pain. I decided to come off of it because I didn’t like that I was relying on it.

Then came Gabapentin which was a nightmare medication for me. It was supposed to help with the Fibro pain but the side effects completely outweighed any advantage it had. The first couple of months taking it, after every dose (3 times a day) I experienced horrible dizziness and nausea and it knocked me out, all I could do was sleep which didn’t help me CFS! The worst side effect for me was the weight gain, I put on about 2 stone in a matter of months and unfortunately, even after coming off of it, I haven’t managed to lose this weight because I struggle to exercise with my pain so now I am very self conscious and I regret this medication completely.

I was recommended Pregabalin after this experience which was said to have less side effects than Gabapentin and so far, this medication seems to suit me a lot better, I haven’t noticed any side effects, apart from the fact my weight seems stuck no matter what I try to lose it.

Lastly is Tramadol which is something I never wanted to take because I’d heard horror stories and it seemed like such a strong and harmful drug. But my pain, although being more stable with the Pregabalin, was still extreme at times and I had nothing to help in those moments so Tramadol was prescribed for when my pain is at it’s worst. I’ve never had a drug effect me like Tramadol does, it helps numb my worst pain but it does give me a giddy and high feeling which I don’t enjoy and the day after taking it, I’m unconscious for most of the day because it knocks me out and my whole body feels like a noodle. At the moment, I take Tramadol sparingly, only when I can’t cope so the side effects are manageable and I can put up with them.

So there is my brief medication history. I always find it interesting how different drugs effect people differently and I welcome anyone else’s experience with side effects. To me, it comes down to weighing the advantages with the disadvantages and making some compromise.

Why CFS means I look terrible all the time!

When I see women in public who have their hair all perfectly straight and their make-up is done flawlessly I get seriously jealous. Because there I am, with my hair tied up but still somehow flying around my face, my make-up was there but now it’s either been done in 5 minutes or it’s sweated off my face.

Getting ready to go out is hell for me because by the time I’ve got dressed, wrangled my hair and put make-up on, I’m ready for bed again. One of the worst symptoms I deal with when getting ready to go anywhere is sweating. CFS/Fibro make my temperature control awful, I’m either freezing or boiling and when I’m hot, I just can’t control it, I can’t cool down! It doesn’t help that usually I’m freezing in the boiling sun and boiling in the freezing cold. The looks people give me in the middle of winter when I’m walking around in a strappy summer top is a picture.

But my sweating seems to always be triggered when I’m getting ready to go out. As soon as I start picking out what I’m going to wear, the first drops start dripping off my head. I straighten my super thick, wavy hair and within minutes it’s damp and frizzy because the head from the straighteners is making me sweat worse. My make-up goes on and at this point it’s the only thing I have going for me because my hair is ruined and I can’t get dressed because I’m sweating too much. It takes about half an hour for my make-up to literally be sweated off my face. At that point I’m frustrated, and fed up so my hair gets pulled back into a pony tail and I wipe all my make up off and come to terms with the fact I am never going to look like all the other women who go out looking perfect and put together.

It’s frustrating because I used to love doing my make-up and my hair, dressing up all nice and going out with friends and now it’s a matter of making myself look as presentable as possible while internally burning up and externally sweating all the fluid out of my body. It doesn’t help that one of the side effects of my medication is excessive sweating! That couples with my CFS/Fibro temperature issues and I’m doomed.

Does anyone else have this problem? I feel like I’m the only one! If anyone else struggles with this and has any remedies or advice then please let me know! Until then, I’ll continue looking like I’ve stepped out of a sauna.

Fatigue is my stalker

Right from the moment I wake up, to the moment I go bed I’m plagued by fatigue. Some days it’s better than others but it’s always there, waiting to overwhelm me.

Today is a bad day, I woke up with my alarm but physically couldn’t get up so slept on and off all morning. I’ve been up 3 hours and I feel as if I’ve been up days and my whole body feels exhausted. I’ve managed to do the washing up and the hoovering, taken care of the cats litter tray and that’s probably all I’ll manage to do today. I feel like a failure when I compare myself to all the people who have been out at work all day, on their feet and doing job after job. I used to be that person.

I don’t know how washing up or hoovering manage to exhaust me so extremely, maybe it’s because I was exhausted before even doing the jobs but after I feel like I’ve been to the gym for an hour. I know if I went to bed now, I’d sleep the rest of the day away but I hate that. I used to be a fairly active person, and I still don’t like being stuck inside all day or having to stay in bed. I constantly feel like I need to be doing something but my body fights me on that constantly. I’ll attempt to stay awake as long as I can so it feels like I’ve actually experienced the day and not let it just pass me by. Then I’ll go to bed and not be able to sleep well because of the pain in my back and other joints. It’s a constant fight, in some ways I think fighting is what makes me so exhausted.

I don’t like that my body is constantly fighting my mind, it’s stressful and harmful to my mental health. All the things I’d like to do, the things I plan and get excited about but end up cancelling because I don’t have the strength that day, it’s disappointing and it makes me hate myself. I don’t know how to balance that argument between what my mind wants and what my body can manage.

Some months are better, I can manage two walks a week and some trips out in the car; others, I don’t have the energy or strength to leave the house at all. It doesn’t follow a pattern either, I can have two good weeks and then a month of bad ones. Maybe if it followed a routine or a pattern and I could tell how I was going to feel then I’d be able to accept it more and plan but I don’t have that ability so I just have to wake up every day and assess what my body can handle that day.

That’s why I compare my fatigue to a stalker; because it never leaves me. Some days it actively takes part in my day, others it’s just in the background waiting, but it’s always there.

My First Blog Post

I don’t remember what it feels like to sleep and wake up refreshed; ready for the day. I don’t remember how it feels to walk without pain and aching in every muscle. I wish I could remember what it felt like being well. Now I wake up every morning and feel exhausted; like the 9 hour sleep I just had was nothing. I watch everyone going about their lives while I’m stuck inside, doing small bits of housework that makes me feel like I’ve run a marathon. I take pain killer after pain killer to manage the pain that covers my whole body. I can only manage to stay awake for 6 hours before I feel ill and have to go back to bed; I sleep for a couple of hours so I have the energy to get through the rest of the day.

I developed M.E after having Glandular Fever, a virus that the majority of people recover from and never think about again. All I think about is how that virus changed the whole course of my life. It’s like my body gave up in that moment and decided it was going into hibernation. I wish my body had been strong enough to fight that virus off. Now if I catch a cold or another virus my whole body crashes and I barely function, I’m overwhelmed by illness.

Every day I wake up exhausted and the fatigue follows me through the day, getting worse and worse. I can’t concentrate, my head feels like it’s filled with cotton wool most of the time. My social life doesn’t exist because after a few hours out of the house, my body begins to complain and my energy declines quickly. I zone out of conversations, get my words mixed up and forget what I was saying. People don’t understand that I’m not simply tired, I’m severely fatigued and every part of my body screams for sleep.

2 years after I was diagnosed with M.E, I got a diagnosis of Fibromyalgia. I experience pain for no reason at all, like I’m being punished internally. Every muscle aches constantly, every joint seizes up and complains when I move. I have the body of a 90 year old woman despite being 25. I struggle to undo jars and bottles, I can’t hold a kettle if it’s more than half way full. Some days I can walk into the local village and other days, I can barely make it to the end of the driveway.

Since my initial diagnosis, it’s been a turbulent journey. I’ve taken people’s judgement and felt guilty for having an illness that other people can’t physically see. I’ve been called a liar, I’ve been told it’s all in my head. I’m at a point in my life now, where I’ve come to terms with my limits. I have to listen to my own body and rest when I need to without feeling guilty or ashamed. I’m trying to manage my condition the best way I can. I’m working on getting a degree in English Language and Literature and I’m living my life the way I need to, with baby steps and a lot of support from family. I’m determined that this illness will not define who I am, it may limit me and place obstacles in my path but I am not my illness. There are days I want to give up fighting, moments of real darkness but they are not as strong as my will to live and enjoy life and I hold on to the hope that one day my body will wake up and decide to recover; so I can remember what it’s like to sleep and wake up refreshed, with energy to last the whole day.