Panic Attacks Make Me Feel Weak.

There’s nothing like a panic attack to make the rest of your day feel terrible. I have social anxiety and the reality is; one single person can lead to me having a panic attack. I’m not just an introvert who likes to dwell in my own company; I have a mental illness that makes me terrified of people. Humans are a social species, we need other people to keep us sane and happy…my brain has decided despite that it’s going to make being social impossible for me.

It’s so hard to explain social anxiety to other people, it’s not just being anti-social; it’s being distressed at just the idea of interacting with other people. Today my panic attack was caused by something others deal with easily; a repairman turning up to update my smoke alarms. Others would have dealt with it like it was nothing but my brain can’t cope with someone turning up unannounced to my house. I then have to let that person into my safe space which completely takes away my feeling of safety. I live in council housing and my housing association have my issues on file so I’m given prior notice if anyone needs to come to my house. That simple act of letting me know and prepare is the difference between me being simply uncomfortable and full on panicking and having a break down. But today I had no prior notice and that simple act changed the whole experience.

I only answer the door if I’m expecting a delivery and that’s the only reason I answered the door today. Instead of a simple delivery it’s a man who needs to come into my house and do some work. This unexpected moment completely freezes my brain. I want to explain and say I can’t let him in, I want to ring my Mum who is ten minutes away and can come and deal with the situation. But I can do none of these things because my brain has short circuited and I’m incapable of anything but a one word answer. So I open the door and let this stranger in despite my whole body fighting me. I’m panicking but this man won’t see it because when I’ve learned to hide it very well. He can’t see that I’m gritting my teeth so hard it hurts, or that I’m digging my nails into my skin and scratching because pain is the only thing that stops me physically collapsing into a heap and crying like a baby.

The physical and obvious panic attack comes when he leaves. Because all that adrenaline that’s been rushing through my body has nowhere to go. My safe place feels unsafe because someone else has been in it and most of all, I feel like a complete and utter idiot because all I want to do is be a normal person and interact socially without a break down. All of this self-hate and adrenaline makes me hyperventilate, makes me sweat and shake. I’m crying and struggling to get my breath, while everything around me spins. I’m not in control of my own body and all I can do is sit and wait for my brain and body to run out of energy.

That’s my reality. I won’t forget it and get on with my day. I’ll spend the rest of my day feeling broken, embarrassed, ashamed and completely weak. I hate feeling weak, I like to think I’m a strong person, I’ve overcome so many obstacles and struggles. But the reality is I have social anxiety, I’m terrified of people and I am weak.

Sometimes I wish I had a big sign on my head that said “social anxiety” because then at least people could see my mental illness, they could try and be more understanding. You never know what battles are going on in someone internally, so be kind and be patient.

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.

Mask exemption = prove you illness!

It’s a very confusing and worrying time right now and for those of us who suffer with anxiety; it’s terrifying. One of the latest things to affect my anxiety is the use of masks in public.

I think wearing a mask is a simple selfless act, it protects others and minimises the spread of illness. I agree that the majority of people should wear a mask. But where as it’s a simple act for a majority; it can be a distressing act for a minority and I feel that this should be understood and accepted.

I walk into a shop without a mask and although I look young, physically healthy and capable to the store staff; I suffer with autonomic dysfunctional which causes me to breathe difunctionally; I hyperventilate especially in situations of anxiety. As soon as I enter I’m questioned about my lack of mask and I explain myself, feeling like an imposter. As a person with social anxiety this is deeply distressing to me and as a person with a physical invisible illness, it’s deflating having to explain my illness and prove I have an illness despite my physical appearance. But the most distressing feeling comes from moving around the store, being glared at by other customers questioning why I can get away without wearing a mask like I’m committing a selfish and malicious act when in reality I’m just trying to do my shopping without making myself ill. The looks from other people are the most hurtful act as their judgement makes me feel like a disappointment, like a criminal.

Now, I have a mask and I wear it if I go out but when my symptoms flare up then I can either remove the mask or potentially pass out in front of everyone. I make myself wear a mask because the reality is, I’m too scared to go through the experience of explaining myself. My anxiety forces me to wear a mask just to avoid the judgemental glares and questions that will no doubt drown me if I choose not to wear a mask. But I watch people like myself, with an invisible illness trying to explain themselves and although in some cases they are treated fairly, the majority of the time they are asked for proof; they are made to prove their illness to a person who has no medical training, to a person silently judging them and making them feel uncomfortable.

I don’t go out anymore. For me, wearing a mask with my POTS and dysfunctional breathing causes my heart rate to rocket, I begin to sweat profusely and hyperventilate. This leads to dizziness, vision disturbance and I begin to black out. Instead of forcing myself to wear a mask and make myself ill I stay at home and avoid going out. I avoid it because the anxiety of potentially having to prove I suffer with a life-limiting illness is so distressing to me; I can’t even consider facing it. Before Covid, I’ve had to explain my illness and prove myself but the idea of doing so, just to go outdoors now is a horrible feeling.

The point of this post is to implore people to be less judgemental and kinder to those who cannot wear a mask. Of course, there are people who abuse the exemption for selfish reasons but you can’t treat everyone as if this is what they are trying to do. There are those of us who have genuine reasons for not wearing a mask and our chronic illnesses make our lives difficult enough without judgemental remarks and questioning. It’s a worrying and unprecedented time right now and we all need to think of others and be kinder and more understanding.

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.

Pain, pain, pain.

This weekend was my worst for pain in a while. It always seems to hit when I really don’t want it to. I had a family day planned on Saturday and it’s an hours drive there and an hour back. Sitting in a car for that long makes me achy at the best of times but I was already in so much pain. I didn’t want to take my pain killers because they knock me out and I wanted to have a nice day with family, not be unconscious.

I pride myself on not letting my distant relatives see how badly my CFS and Fibro affects me so it was a struggle this weekend because I couldn’t hide it. I had my tens machine attached to my back to relax the muscles because my back felt like it was cramped up and tight. I’d rubbed arnica gel onto every body part to try and control the aching. I pretty much just sat and tried to be as social as I could while feeling like my whole body was betraying me.

I never believed that you could have pain everywhere but since having fibro, I’ve been proven so wrong. My fingers and toes hurt, my shoulders hurt, my legs hurt, my arms hurt, my back hurts, my head hurts…everything is painful and it feels like my body is playing some cruel joke on me.

I have an appointment with my GP tomorrow to discuss how overwhelming the fatigue and pain has been over the past couple of months, I’m having a major flare up and it’s making my life more miserable than usual. I don’t expect to be given any major help because I’m already taking all the pain killers and staying as active as I can but it feels like I have to tell the doctor how ill I’m feeling. I have so much planned for next month so I need to get control of this flare up somehow and manage it. I wish there was some magical cure, I really do.

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.

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.

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.