In denial? 

Since diagnosis in August, I’ve gone through a whole range of emotions about fibromyalgia… disappointment, anger, depression… but today I want to talk about denial. 

Let me start by saying this is just how I am feeling and does not reflect the situation anyone else is in. I am not in any way saying that people who (like me) are able to function quite well do not have fibro, but I just wanted to write about my concerns about myself. 

I know that I get pain. I know that’s not normal. I know the level of tiredness I experience isn’t normal either. 

But 

(And there’s always a but)

I sometimes feel like (and today is one of those days) I am able to do too much for someone with fibromyalgia. I work full time (and have been working over fulltime since April – left my 2nd job yesterday to go ‘down’ to fulltime) and I manage to do a lot of things like being a scout leader and dog walking. 

Shouldn’t I be stuck at home if I have fibromyalgia? It can’t be “that bad” if I am able to do these things. 

What if it isn’t fibromyalgia and I’m just making a big fuss. 

Everyone else I have come across with fibro has it much worse than me, so what if mine isn’t real? 

I know I have a diagnosis now but today I feel like it’s not valid. 

Tomorrow I have a hospital appointment with the pain and fatigue CBT team, I am interested to see how that goes. 

Feeling a bit funny at the moment. I think part of me wants the diagnosis to be wrong, and part of me just doesn’t feel like my experience is valid enough for the diagnosis… maybe I’m just in denial?

Love,

Ellie xx

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In denial? 

Since diagnosis in August, I’ve gone through a whole range of emotions about fibromyalgia… disappointment, anger, depression… but today I want to talk about denial. 

Let me start by saying this is just how I am feeling and does not reflect the situation anyone else is in. I am not in any way saying that people who (like me) are able to function quite well do not have fibro, but I just wanted to write about my concerns about myself. 

I know that I get pain. I know that’s not normal. I know the level of tiredness I experience isn’t normal either. 

But 

(And there’s always a but)

I sometimes feel like (and today is one of those days) I am able to do too much for someone with fibromyalgia. I work full time (and have been working over fulltime since April – left my 2nd job yesterday to go ‘down’ to fulltime) and I manage to do a lot of things like being a scout leader and dog walking. 

Shouldn’t I be stuck at home if I have fibromyalgia? It can’t be “that bad” if I am able to do these things. 

What if it isn’t fibromyalgia and I’m just making a big fuss. 

Everyone else I have come across with fibro has it much worse than me, so what if mine isn’t real? 

I know I have a diagnosis now but today I feel like it’s not valid. 

Tomorrow I have a hospital appointment with the pain and fatigue CBT team, I am interested to see how that goes. 

Feeling a bit funny at the moment. I think part of me wants the diagnosis to be wrong, and part of me just doesn’t feel like my experience is valid enough for the diagnosis… maybe I’m just in denial?

Love,

Ellie xx

Learning to manage 

I know that chronic illnesses have ups and downs. I know that there will be times when my symptoms are unbearable and times when they are barely noticeable. 

But this weekend it feels like it’s getting worse. I feel like my body has no resilience. I am living weekend to weekend. Yesterday I went for lunch with a friend and we went to the theatre. It was nice. It didn’t involve much walking or physical activity at all, yet I was still knackered when I got home. Yesterday evening my pain got worse than it ever has before. As in the generalised all over achyness as opposed to a specific pain actually caused by something (anyone ever stepped on a plug? Ouch!) 

Today I took my scouts on a hike. It was 6 miles. I am tireddd! When I agreed to do this, it was at a time when my pain wasn’t too bad. Last night I was not sure if i would be able to do it today. Managed to sleep and felt a lot better this morning. Not good, but better than yesterday. 

So I did the hike. I am bloody knackered. I don’t think I’ll do it again next year if things are the same. I’m disappointed. The fear I had last night was this is the beginning of not being able to do things. This is the beginning of limiting my activities, of not being able to do activities that “normal” people can do. That’s scary. It makes me sad. 

So now that I’ve overdone it, it’s time for self care…

I have just been through half of my wardrobe and thrown a load of stuff out, I feel exhilarated. For some reason, despite feeling exhausted, it felt like what I wanted to do. So I did. I am watching some random stuff on YouTube while I did it, just chilling. 

I have put a face mask on and it has dried and now my face looks all funny and shiny. I will peal it off soon 😊 I am about to run a nice bubble bath listening to relaxing music and then I’ll put my pyjamas on. Lovely! 

Hope everyone is having a nice and restful weekend and not overdoing it! 

Love,

Ellie xx

Hospital season 

On Monday is my next hospital appointment. I am in the strange situation of having 5 hospital appointments before Christmas. I find that embarrassing, ridiculous. I guess this is the life of someone with multiple long term conditions. This one is the psychiatry appointment. 5 different appointments with 5 different departments of the same hospital! 

My anxiety is pretty bad at the moment. Finding myself avoiding things more than before. Mainly social things. I am considering asking to try another medication. We will see. Is it worth the Side effects? I’ve already tried at least 6 antidepressants, but there are still more options. 

Time for bed said zebedee! 

Love,

Ellie xx

Stress

Hi everyone,

I haven’t written anything for a while but I’ve still been reading other blogs. I have been pretty busy and pretty tired. I couldn’t find the words I wanted to write. There is a lot of change is underway at the moment. And it’s stressful. Anxiety is up, mood is down. Yuck!

Following my diagnosis of fibromyalgia, I decided that doing 2 part time jobs adding up to more than full time probably wasn’t a great thing to continue to do. I have been feeling for some time that it is not sustainable and I am heading for burnout. So the diagnosis was the kick up the butt I needed. That and the fact that extra hours came up at one job to allow me to go full time there. Is it a coincidence? Is it fate? I don’t know, but I made the decision to go “down” to full time. 

Leaving is going to be very hard. I have been at that work place for 2 years although I have had different roles in that time. I am stressed at the moment about the job, doing handovers, telling clients I am leaving. That is the worst. Almost enough to make me stay. 

But this time I said no. This time I put myself first, I put my health first. I am hoping this will help me manage better. Less hours and hopefully less stress can’t be a bad thing! I am also trying to be less busy generally and make more time for self care. More time for blogging too hopefully!

So take a leaf out of my book and do something for yourself. Look after yourself and your health! 

Love,

Ellie xxx

Stepping out of my comfort zone

Today my boyfriend had a day off, which is very unusual for a Saturday. We went for a walk this morning and then did a bit of shopping, went for dinner and then met up with his work friends. Let me first say, his friends are lovely and they always make me welcome. 

But I feel very anxious about being around lots of people, especially when I don’t know them very well. So we were going to a pub in central london on a Saturday evening, I knew it would be busy. 

Yesterday I said I might not go to the drinks in the evening. Today I decided I’d see how I felt and then decide. When we arrived at the drinks I said I would leave after about an hour. 

I actually stayed for over two hours. And I had a nice time. Yes I felt a bit anxious at first and I am bloody knackered from all the walking I’ve done today, but I enjoyed the evening and I’m glad I went. 

I guess the point of this post is to say I am trying to push my comfort zones. And it’s a good thing to do. I always put in my safety mechanisms, for example I took my car home before we went into london so that I could leave the drinks earlier than my boyfriend if I wanted to (I did and he’ll probably be out most of the night) and that helps with anxiety. I find if there’s no way out, that’s when I struggle. Like with the hike, I was more anxious because I knew that if I dropped out the whole group had to stop (minimum group numbers). It’s also important not to push yourself too hard (where is the line? You’ll have to judge that for yourself!) because sometimes you feel like you go backwards that way, but usually if you are taking small steps, a step out of your comfort zone is a step in the right direction. 

So go on, push your boundaries and do something that’s a bit difficult, you might surprise yourself! 

Love,

Ellie xx

Pushing my comfort zone

Today my boyfriend had a day off, which is very unusual for a Saturday. We went for a walk this morning and then did a bit of shopping, went for dinner and then met up with his work friends. Let me first say, his friends are lovely and they always make me welcome. 

But I feel very anxious about being around lots of people, especially when I don’t know them very well. So we were going to a pub in central london on a Saturday evening, I knew it would be busy. 

Yesterday I said I might not go to the drinks in the evening. Today I decided I’d see how I felt and then decide. When we arrived at the drinks I said I would leave after about an hour. 

I actually stayed for over two hours. And I had a nice time. Yes I felt a bit anxious at first and I am bloody knackered from all the walking I’ve done today, but I enjoyed the evening and I’m glad I went. 

I guess the point of this post is to say I am trying to push my comfort zones. And it’s a good thing to do. I always put in my safety mechanisms, for example I took my car home before we went into london so that I could leave the drinks earlier than my boyfriend if I wanted to (I did and he’ll probably be out most of the night) and that helps with anxiety. I find if there’s no way out, that’s when I struggle. Like with the hike, I was more anxious because I knew that if I dropped out the whole group had to stop (minimum group numbers). It’s also important not to push yourself too hard (where is the line? You’ll have to judge that for yourself!) because sometimes you feel like you go backwards that way, but usually if you are taking small steps, a step out of your comfort zone is a step in the right direction. 

So go on, push your boundaries and do something that’s a bit difficult, you might surprise yourself! 

Love,

Ellie xx

I won

Two weeks ago I was diagnosed with fibromyalgia. Since then I have been sky diving and completed a 4 day walking expedition. Take that chronic pain and fatigue! 

I feel so proud that I finished my hike. It was bloody hard and painkillers and sugar were my friends, but I did it. I was incredibly lucky with the weather (hello burnt arms!) and that I had a lovely team I was walking with, but we did it. The first morning of the first day I wasn’t sure if I would get to the end, but I was determined and continued. By the end of day 4 I was in agony and all I could manage was putting one foot in front of the other (had to leave the map reading to the others) but WE DID IT!

I’m completely shattered now though. Clever me thought it would be a good idea to go straight back to work afterwards, it was not. Still, only one more day at work until the weekend and my best friend is coming to stay!! 

I want to remember this when the pain and fatigue takes over and I feel like I can’t do anything. I will not let this control my life, I will not let it win. I will not let a diagnosis stop me from doing the things I want to do*. So for this week I can say, I won. 

Will write again soon, got a load of posts in draft but this week I’m too sleepy!

Love,

Ellie xx

*although I need to learn to manage my time and ability to stop and rest better, but I’ll get there in time. 

A bit of a moan 

Feeling a bit sorry for myself today. Not only am I achy and tired as hell, but I have ANOTHER cold. The last one I had lasted nearly 4 weeks and that was less than 2 weeks ago that it finally went… my immune system is rubbish and I get every illness going, very frustrating! I really can’t afford to be ill this week as I am off on a 4 day hike on Friday! (Something else I am worried about given the tiredness and achiness! But it has been planned for ages so I can’t let people down) 

I am feeling pretty run down and it’s only Monday. Woke up this morning with a sore throat, cough and a cold… it all appeared in the night! Damn it immune system, you’re meant to stay awake! 

It’s not yet 9pm and since I finished work I did have a nap, but I’m off to bed now. Hoping to sleep it off! Cue the lemsip! 

Hopefully I will be back with a more positive post sometime soon, but today I just wanted a bit of a moan. 

Love,

Ellie xx

Run Ellie run! 

I have taken up running. I haven’t done that much running as I have been knackered recently but went for a run today. It is humid and hot but I managed just over 5km (it was 3.3 miles according to my app).

My goal is to run a half marathon to fundraise for a scout thing I am doing. I have a long way to go but happy that I can run 5km without dying now, in about 30 mins. 

Running makes me feel alive. I need to remember that feeling the next time I feel too tired and achy to run. It really does make me feel better to run, at least at the time it does. Sometimes I get the pay back afterwards and I’m knackered for days, sometimes it seems to be ok (fingers crossed this is an ok day!) 

I want to get into regular exercise for a few reasons;

1. Exercise makes you happy. It boosts the endorphins and all that jazz. 

2. I want to lose weight/ feel better about my body. Also IF i do have fibro, it will help not to have extra weight hanging around making the pain worse

3. I want to be healthier. I am also working on my water intake and trying (and often failing) to eat more healthily. I just really love chocolate and everything that’s bad for you! 

4. A sense of achievement. When I run further or quicker, when I don’t feel quite as exhausted after spin, when I can do more press ups*, these are all achievements and it makes me feel good. 

Love 

(A very sweaty) Ellie xx

* I have to confess that I probably can’t do any currently. Last time I started exercising properly I managed to be able to do about 20 ‘girly’ press ups, which isn’t many, but when I started I fell on my face after 1!