I can’t believe it’s been a whole week since I last posted. Things all roll into one when you’re ill and in bed all week. It’s been a really bad week for me depression wise and chronic fatigue wise. The week started with me receiving a letter that said I was unsuccessful with me application for PIP benefit. I’ve been on PIP for two years since I had to quit working due to my depression and it’s something that I really value because I am too ill to work at the minute, I’ve tried and the money from the benefits gives me a little bit of independence and a lot of support to live my life. Reading through the decision letter was something that triggered my depression big time because it was such an unfair decision. I am still really angry and disappointed that I’ve been judged as I have. I’d had a face to face assessment with a person who was not medically trained at home, because my anxiety prevents me travelling into town. The assessor had stated that I seemed fine in person and did not seem anxious at all which is completely ridiculous! I don’t know how anyone can pretend to know what anxiety looks like if they don’t suffer with it, it’s different for everyone! I hadn’t slept for three nights before that assessment, I was sweating heavily and could only give one word answers because I was so nervous, I was continually pinching myself throughout because that’s how I handle stress, by hurting myself in some way. Maybe if I’d pulled a knife out and started cutting in front of the assessor she would have thought I was anxious then!
The letter went on to say that my medication appeared affective because I basically had not attempted suicide in the past two years. This outraged me and made me seriously doubt the future of my country. It is so easy for some people to get benefits, people who go on jobseekers who don’t look for work and live off the benefits nicely for the rest of their life. I cannot get benefits because they think my mental health is stable, because I haven’t tried to kill myself lately and it’s really hurtful. The whole assessment and decision letter was based on the physical side of illness, the mental side of illness was completely ignored and I can really relate to the issues many people suffering with mental health go through when trying to get financial help. Mental illness should be given the same rights as physical illness, it isn’t any less suffering because you can’t see it! I feel let down by my government and country, I feel betrayed and not cared for. I’ve been ignored and refused something that I should be eligible for, simply because mental illness isn’t recognised the same way physical illness is.
So my week started off badly and as a result, my depression was worse than it’s been in a long time. I felt useless, lost and so stressed about life. Tuesday the doctor rang and told me I’ve got a b12 deficiency so now I have to take tablets for that, which explains why my fatigue has been so much worse the past month. To top the week off, I caught a cold. It sounds so stupid, the common cold made me bed ridden for three days. My immune system has been so weak since my chronic fatigue came on, I catch bugs so easily and I just can’t fight them off. I caught the cold of my mum who got over it in two days and here I am, five days in and I’ve only just been able to get out of bed, and that’s only to lie on the sofa. It’s really hard getting bugs with chronic fatigue because on a normal day, I feel ill, achy, fatigued and brain fogged so adding a cold to that is just awful, it completely flawed me and I couldn’t fight it off. So Christmas is going to be an illness filled one this year as usual.
It’s been a terrible week and it’s hard to believe anything well get better right now, my depression is in its element and I’m devastated that I have to live like this. I’ve just got to hold on to the little things that make my life worth the fight, like my fiancé who loves me, my family who love and support me and the hope that one day, I won’t have to fight so hard just to live.
The lead up to Christmas is such a busy time and it can be quite difficult to keep up with everything. My Chronic Fatigue Syndrome limits my activities so much but I don’t want it to destroy me Christmas, it’s the happiest time of the year and I want to enjoy it. Unfortunately if I take part in an activity, it has consequences and the next day the fatigue will hit me and I might not be able to get out of bed. Today has been one of those days, I slept in till twelve, attempted to get up to meet family but couldn’t manage it. I was falling asleep standing up and every part of my body ached.
For the last three days I’ve pushed myself to commit to events and it’s caught up with me finally. Thursday I helped my Mum all day with work and usually this would make me unable to do anything the next day, but the next day was my sisters birthday and I couldn’t let me fatigue stop me from sharing the day with my sister. I’ve let my family down enough and I do whatever I can to make it up to them. My sisters day wasn’t only physically draining but mentally as well because it involved going out for a meal which with my anxiety is a big effort. The day left me mentally and physically exhausted but I promised to have my sister around the next day with my Niece to do Christmas things. I woke up that day and nearly cancelled, I felt dead and I wanted nothing more than to stay in bed and sleep for a week but I didn’t want to let me niece down at Christmas so I got up, I didn’t manage to get dressed and my fiancé had to make all the food and get drinks but I stumbled my way through the day and managed a nap after they had gone. I know that I pushed myself too much, Chronic Fatigue is about limiting yourself, doing small things and when it feels too much, resting because the more you push yourself, the more ill you will be when it catches up. It always catches up, you might think you’ve got away with it but you haven’t. I don’t like admitting that I can’t do something so I do it, even if it strains me, maybe I should put myself first but I’ve never been like that, I’d rather focus on other people and make them happy.
So today has been horrendous, the fatigue weighs me down, my body feels like I’ve ran a marathon and been hit by a bus at the same time. Mentally I’m exhausted, I can only just manage this post and it’s not my finest piece. I’ll probably be in bed for the next two days now and it’s frustrating because Christmas is a time to be with family and to be busy getting prepared. For me it’s about taking part in whatever I can, getting some naps in whenever I can and hoping that my body can keep up and the fallout won’t be so bad. I feel like after this Christmas I might just hibernate until next winter.
Just today I was saying to my fiancé “I hope I get some new pyjamas for Christmas” and he looked at me like I was the oddest person he’s ever met. Living with Chronic Fatigue Syndrome and Depression does make you grateful for the little things though. I wake up in the morning and I feel like I haven’t slept even though I’ve had a good 8 hours, my joints are stiff and I’m aching from lying in one position. So instead of getting up and getting dressed, straightening my hair and putting some make up on, I resign myself to another day in my pyjamas trying to do what little jobs I can around the house. I feel so uncomfortable in my own body with all the pain and exhaustion that I hold on to whatever comfort I can find.
When my Fiancé proposed to me, he gave me a ring……and a blanket. The majority of my time is spent in my pyjamas under a blanket, and in the winter when it gets cold, the temperature seems to seep into my bones and make my joints feel even worse. My depression gets stronger with the dark nights and mornings and the rainy cold days. So when people ask me what I want for Christmas I say fluffy socks or new pyjamas, this year I even asked for a slow cooker. Cooking dinner is something I can’t really do because my fatigue makes me so forgetful, I burn things and forget the hob is on, a slow cooker would mean I could put dinner on in the morning and serve it later with minimal effort. Something else I ask for at Christmas is bubble bath, bath salts or bath bombs. I have heard so many people say that all they get for Christmas is bath gels and body washes but I love it because a bath for me is a truly relaxing moment where the hot water can ease my aches and make me feel refreshed which is something I don’t feel a lot of the time.
So if you know someone with a chronic illness this Christmas, think about the little things that could make just a bit of their life easier or offer them a little bit of comfort during their struggle.