The guilt of cancelling plans.

One of the things I find most difficult about living with a chronic illness is cancelling social engagements. Before chronic illness I was a very reliable person when it came to making plans and sticking to them.

Chronic illness has made me this unreliable person who might cancel plans an hour before or rearrange plans a dozen times. The most important thing I try to get across to friends and family is that I’m not trying to be difficult, I’m not cancelling because I can’t be bothered or don’t want to meet up. Sometimes I wait until an hour before to cancel because I’m praying and hoping my body will just cooperate and allow me to socialise and be a normal 26 year old.

I had plans to see my sister yesterday and she was going to do my nails and I was looking forward to it! I woke up exhausted as usual but hoping some energy would appear from anywhere. I got dressed, I ate breakfast and did normal things about the house. An hour before I was due to leave, my body just switched off. I hate that about M.E, one minute my body is coping and managing my fatigue and then it just switches off and all I can do is go to bed because I don’t have the energy to stand up for more than 5 minutes or even lift my own arms and head.

Then comes the difficult part which is letting the other person know I’m not well enough to meet. I try to get across how disappointed I am in myself but it always falls flat and feels like I’m making excuses. I feel like I’ve let my friends and family down and I hate it. I hate feeling like I’ve let someone down and it affects my mood so much and is one of the main triggers for my depression.

Eventually I just stop getting invited to socialise and it’s both understandable and devastating because I want to see my friends and family but my body betrays me. I see pictures online of all my friends meeting up and feel sad that I wasn’t invited but also I expect it because why bother inviting someone who is going to cancel 90% of the time. It’s a very isolating and lonely experience.

I wish people could experience just one day in my body, so they’d understand the strength and exertion that goes into just doing basic things like getting dressed and taking a bath. I wish people would understand that I don’t cancel because I’m a bad friend or because I can’t be bothered; but because my body is too exhausted to leave the house.

It’s inevitable that I feel guilt for being so unreliable and that guilt is like poison; it infects the brain and makes me feel worthless and hopeless. I can only hope that my friends and family take a minute to think about how cancelling plans affects me and how disappointing it is to be stuck in bed instead of being out, socialising ad enjoying myself.

When did people become so judgemental?

Is it me or have people become more judgemental about illness and disability? When I was young, I was always taught that people are all different and some have disabilities or illness, but to treat those people with the same respect.

It seems there has been a lot of headway made in making invisible illnesses more accepted lately, like the new blue badge scheme but it doesn’t seem to change people’s opinions.

I don’t work, I used to work but with my CFS/Fibromyalgia it isn’t possible right now. When people ask and I explain this, they nod and appear to be understanding but then comes the comments;

“You’re young, you should be out working”

“You don’t look ill or disabled”

“You could at least work part time”

It’s these comments that get me down because people seem to think I choose not to work. I don’t choose to live with a limited income, struggling to afford anything for myself, I don’t choose to lie in bed at home, in pain and wishing I could just go out and work like a normal person my age. Some days, all I manage to do is have a bath and then I can’t physically do any more so how am I going to go out and work everyday?

If that’s not bad enough, applying for benefits is the most shameful and embarrassing process I’ve ever been through. When I get assessed, it’s unfairly because physically I look fine. I have to justify my illness, to then be told I got dressed for the assessment so am able enough to work! It’s the pettiest and most depressing system. I don’t choose to go through that, I have no choice because I cannot manage to work but I need to eat.

Older people judge how much medication I take and say I shouldn’t be taking that much medication at my age; like because I’m 25, I can’t suffer with a long term illness. I bought a fold up walking stick this week so I can have some extra support when I go out and have to walk longer distances than the usual. But I am so nervous about using it because I’m afraid people will stare, I’m afraid people will judge me. It shouldn’t be that way. I shouldn’t be embarrassed to do what I need to do to manage my illness.

It seems that people can be a lot meaner now, and that cruel words and comments are muttered too often. Deep down I know I shouldn’t be ashamed of myself or my illness but when I constantly hear judgemental comments and receive judgemental looks, it’s hard to remember that.

My anxiety makes me a bi*ch

Very often, I’m encouraged and pushed to go out to social places by my family and friends. These social places trigger my anxiety and as a result, I become an irritable, snappy, moody individual who takes it out on her family/friends.

Going shopping is something most women love to do but I hate it, I’m an online shopper all the way. But occasionally I go out with family to shopping centres and spend some time shopping. It should be enjoyable and rewarding but it’s a nightmare for both me and whoever accompanies me because my anxiety makes me crazy. My anxiety gets triggered by the unfamiliar place and unfamiliar people and I attempt to soothe myself however I can, and my family try to make it easier and less stressful for me which I am grateful for. But after an hour, I can’t control my anxiety anymore and I want to go home so my personality withdraws, I become quiet and fidgety. I begin to try and rush my family through things and then I begin to get irritated with them. I love my family and I would never take my mood out on them normally but my anxiety overrules that part of my personality and I suddenly find everyone around me, irritating!

I see my family enjoying being out and it annoys me because I want to enjoy it but my anxiety is taking over and I just want to go home so I start to snap at my family for small things, I get moody and refuse to get involved in conversation. I say horrible things and become like a moody teenager who hasn’t got their way.

That person is not who I am, I hate that version of me but in that situation, my anxiety rules and somewhere in my twisted brain, I believe that being snappy and difficult will get me out of the situation faster. In that situation, everything irritates me and I’m annoyed and scared so I turn into a bitch.

My family are used to this version of me by now and they know it’s a sign that I’m reaching my limit and need to get out of the situation but I feel bad for them because they take my snapping and moody comments without judgement and they change their own plans to accommodate me. I take my anxiety out on my family and they just try to help. Irritability is one of the main symptoms I feel when I’m anxious, it’s an overwhelming feeling and it makes me a horrible person to be around. I wish I could control it better and keep it inside so no one else has to deal with it but in that bubble of anxiety, it controls me.

Just another symptom of anxiety that makes my social life hell!

My anxiety “quirks”.

I thought it would be fun, or rather enlightening to list all the things that trigger my anxiety; or that my anxiety grips onto. My Mum calls them my “quirks” as if it’s what makes me unique and I like to think of it like that, rather than things my brain can’t cope with. So here is my list of anxiety quirks:

  1. Shops that are too small or enclosed, where the attention will be on me because I’m always in the eyeline of people who work there.
  2. Shop assistants who make conversation with me when I’m checking out, it’s lovely but I’m too awkward to respond.
  3. Answering the phone; I avoid it most times. I can’t make calls either, even to family or friends.
  4. Answering the door; it makes it hard when I’m ordering online because parcels come and I have to force myself to answer the door but if I’m not expecting a delivery then I hide and wait for whoever is knocking to go away.
  5. Locking doors; I have to be sure all doors and windows are locked before bed, or if I go in the bath etc. I even have a lock on my bedroom door so I feel more secure.
  6. The centre of town; I can’t go there to the centre of any busy town, it’s too much and I get overwhelmed with anxiety.
  7. Making sure the oven is off, If I use the oven then I have to check I’ve switched it off before I go to sleep.
  8. Appointments; I am used to seeing my local GP now but any other hospital or doctor appointments make me so anxious.
  9. Laughter; if I’m out and hear people laughing then I assume they are laughing at me because I don’t fit in.
  10. Lifts; being in an enclosed space with strange people is my nightmare.
  11. People asking for directions
  12. What I’m wearing; I end up changing several times before I go out and stress myself out to the point of having panic attacks.
  13. If there is a gap in the curtains at night; I panic that people are looking it the window, even on the second floor…
  14. Ordering food when I’m out for a meal.
  15. People complimenting me; it makes me feel like I’m the centre of attention and feels fake to me.
  16. Sweating; my medication and fibromyalgia make me sweat more than average and I worry people are staring or making fun of me.
  17. Taking public transport. I avoid it at all costs.
  18. Being on a ledge or high place where I could fall.
  19. My weight.
  20. Eating in front of people, I really struggle with it.
  21. Having my hair cut; the small talk and social aspect puts me off.
  22. Being on my own for longer than a couple of days.
  23. Pubs or bars because I always feel like I stick out and don’t fit in.
  24. Having my photo taken or being on camera.
  25. Being approached by people selling things in the street.

These are just the things I can think about right now, but I’m sure there is more. Anxiety is definitely a daily fight, it’s like my brain is constantly working against me. I’d love to be able to go out and be social but my brain literally finds that terrifying. It’s hard being afraid of so many things but I continue to live and make the most of what I can enjoy and at times, I push my boundaries and make myself deal with scary situations because I don’t want to let my feat dictate my life.

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.