Thyroid

This is me now and I’m finally ok with that.

I haven’t wrote a blog for so long, but I thought now was a good time to update everyone. For the past 5 months I have been learning to live with having an official fibromyalgia diagnosis. I have gone through a whole range of emotions in that time. Anger; why me, why my body AGAIN. Relief; finally a name to put to all of my symptoms, I’m not going crazy after all. Sadness; is this me forever? Frustration; I was naively thinking diagnosis would mean the end, but it really was just the beginning. Denial; research suggesting that fibromyalgia is not really a thing, so there must be something else they have missed?

I am now in a really good place and I have accepted that this is just me now and I can’t change it, I’ve just got to live with it. Don’t get me wrong, I have the odd off day, when I have planned to do something for the day with the kids but have to cancel because my head hurts so much or the brain fog is so bad that I can’t think straight. I do worry about what their childhood is like, growing up seeing their mum in pain most days. It makes me feel so guilty. But if anything, it teaches them compassion and I like to think they know I try my absolute hardest everyday.

I am still waiting for my pain clinic referral, which I have been told is worth waiting for. I have had physio, with the most uncaring, patronising man I have ever met. Needless to say, I didn’t go back for my follow up appointment. I have stopped weighing myself because I know I am piling on the pounds, but there is nothing I can do about it. I am learning to love myself again. I will never be the person I used to be 5 years ago, size 10, outgoing, not a care in the world, staying up past 9pm 😂 This is me now and I am weirdly ok about that.

I am learning my triggers slowly. Stress is a HUGE one for me. A stressful day can lead to a a migraine attack lasting a few days. Sleep is also another trigger. A late night or broken sleep will also lead to the mother of all migraines. The one I hate the most and the one I’ve been denying to myself for a long time is coffee 😫😫 I LOVE my coffee, so much that I have lost count on the amount of coffee making devices I have in my kitchen! But after coffee I feel sluggish and brain fog is at it’s worse. It’s been a real learning curve for me since diagnosis, learning what my body like and dislikes, coming to terms with the fact I can’t do the things I used to or can’t eat/drink the things I used to love.

I have also completed my first course since I left uni 5 years ago! My long term goal is to become a counsellor and the first step was to complete Level 2 counselling skills, which I completed last month. I start the Level 3 in September, which I am literally counting down the days for!

The kids have finished school for the summer holidays so I have no school runs to do, no lunchboxes to pack and no uniforms to make! Just 6 weeks of being lazy and spending quality time with my little family.

We are saving like mad to take the kids back to California next year, so we have booked a little break away camping next week. It was a really good idea at the time, when the sun was shining… but now I’m dreading it! 4 children in a tent for a week. A toddler who is so particular with certain things- the slightest thing different can send off into a meltdown! A teenager who, as long as there is WiFi she should be ok, a pre-teen who will have no xbox for a week and will have to spend time actually taking to real life people and an 8 year old who as long as she has got some maths to do, should be ok.

Wish me luck 😂

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Thyroid

Fuck you, Fibromyalgia

Urgh I’m really trying at the moment. Trying to be just me without the horrendous fatigue that’s haunting me at the moment. Trying to hold a conversation when I feel like I’m drunk. Willing the kids to stop bloody arguing for 1 minute so I don’t have to get up and lose my shit. Can’t remember a life before my shitty health problems.

I don’t even know what fibromyalgia is properly, I normally love a google, anyone who knows me with clarify this! But this week I can’t even be bothered to do that.

I feel like my body has run out of energy.

I was told yesterday that my symptoms have got worse since my diagnosis. Yeah thanks for that. I already feel lazy enough as it is without being made to feel like I’m making this up. God if I could make anything up it definitely wouldn’t be a chronic illness.

Being diagnosed officially has been almost a relief. Instead of having to hide how I feel for fear that I sound crazy or lazy I can explain that actually I’m neither.

I feel so down it’s unreal. Maybe its due to the stressful shitty week I had last week, my body’s way of reminding me that i have this shitty condition.

I feel that it’s taken over my life, consuming every part of me.

I have spoke to so many people who suffer from chronic illness’ which has been so nice, I’ve gained so many more friends on Instagram and Facebook who are all super supportive but I have ironically never felt so alone.

Do people not know what to say?

Do they think I’m just being lazy?

If I had a broken leg would people still be the same?

I would just very much like to hide in my bed and not come out. Maybe for cake and coffee, but that’s it.

I don’t even think those close to me really get it. I’ve not told my children because I don’t want them to worry. They knew I had cancer because they had to know as I had my operations and I was in isolation for days. It was fairer to them to explain the truth rather than come up with a lie. But trying to explain this to them seems impossible. I wouldn’t even know where to start, especially as I still don’t fully understand it myself.

It’s the emotional support I crave most at the moment. Someone to just listen and be there. Nothing anyone can say would change anything but just a text to say you know what, I’m here.

Physically I’m owning this shit. I have no choice as life has to go on but emotionally I’m a mess.

Urgh such a pointless moan blog, I apologise.

Thyroid

Dear Body, you suck 🖕🏻

So I’m sitting here in hospital waiting room number 2 of the day. I had my long awaited Rheumatology appointment this morning and he agreed with my GP and gave me a diagnosis of Fibromyalgia. I’m not surprised as I was expecting it but I thought I would be relived that it’s finally been given a name. No more thinking I’m making it up, no more worrying it could be something far worse. This could finally be the end of this chapter.

But I wasn’t prepared mentally for the impact yet another diagnosis would have on me.

In the room the first rheumatologist felt for any swelling, checks for aches and pains. He asked me in detail about my medical history then after umming and ahhing he said he doesn’t think it’s fibromyalgia because I’m not in enough pain. Right ok then. Dick.

He went out to get his colleague for a second opinion. He did the exact same tests but instead of being gentle he was bloody rough!! It felt like I was being beaten up! He obviously knew what he was doing because he said straight away that he was sending me away with the diagnosis. We watch ‘The Good Doctor’ on Netflix and if anyone else does too then you will get when I say he did a Sean Murphy on me! He came in, took control and bosh… diagnosis.I’ve got to have another full blood count, which is something I’m used to so that doesn’t bother me. An X-ray and a CT scan. A whole conversations worth of new information and medical jargon. I feel like I’ve gone back to the beginning again.

This year will be 5 years since my Cancer diagnosis and 4 years in remission. I only have 18 months left on my clinical trial too. I was near the end, my career is starting again and home life is amazing. I finally feel like me again and not a patient. That was until today.

I was given two slips of paper, one for bloods and one for X-Ray. I know you can get bloods done in the walk in without an appointment but X-Ray? I asked him about 4 times because I couldn’t get my head around what he was saying, or retain the information I was just told. I got to the end of the appointment and he asked if I had any questions. I said no. But I did! I had so many but for some reason chose not to ask. I hate feeling vulnerable and like to pretend I’ve got my shit together.

That brings me to where I am now. Haematology ready to be used as a pin cushion again. Not sure I’ve got much left but hey I’ll give it a go.

Next stop is the X-Ray department. Oh joy.

So this is the beginning of a new journey in my life. One that right now I don’t feel strong enough to ride but I don’t have any other choice.

Body. You suck 🖕🏻

Thyroid

So this is me now…. forever??

Today’s been really hard.

There’s not a part of me that doesn’t hurt. The bones in my legs feel like they are on fire, like I’ve run a marathon… but all I’ve done is the school run.

My body is fed up. It hates me.

I’ve been so exhausted all day, but now can’t sleep.

I’ve been thinking a lot about my rheumatology appointment coming up and the fact that even an official diagnosis won’t change anything so is it even worth going? I don’t even know what to expect. My experience with the health care profession is that it’s so hit and miss. One day I’ll meet a lovely GP or consultant who genuinely cares, then the next it’ll be some stuck up graduate on a power trip, reading out of his newly purchased text book, telling me how I should be feeling. Will I be prodded and poked? Will I be made to feel like I’m making it all up? Will they take one look at my notes and see my history and decide I need putting down?!

Do I really want another diagnosis? Something else to put in my already over sized hospital notes?

I’m so sick of being a patient. So sick of hospitals, blood tests, forms and medical jargon. I want to be normal. I find my self envying my friends, the way they can’t remember the last time they went to the GP, the way that their fortunate health is somewhat taken for granted, the way that they are able to be themselves. I’ve almost forgotten who the real me is. I suppose this is me now?

I’m sick of hurting. My legs, my head, my stomach all daily without fail. Some days are much worse than others, like today. It’s like being slowly pecked at, going on and on and on and on until I feel like I’m going to explode.

I know other people are a lot worse than me and I should be fortunate for what I have… and I am. I really am. It just really fucking sucks sometimes.

Most people collect letters at the end of their names, that was my goal once. Now I collect medical terms.

Gemma Griffin.

Thyroid Cancer

Hypothyroidism

Fibromyalgia

Helpmemybodyisbroken…. I think they should invent that one just for me

Next blog I will be positive!

I’m just quite enjoying wallowing in my pitty party for one tonight.

Goodnight 😘

Thyroid

Falling down is an accident. Staying down is a choice 👊🏻

Lots has happened since I last wrote.

At the beginning of last week I had my appointment with my lovely GP. I told her that I had run out of amitriptyline, the tablets I was prescribed for my headaches. I had previously requested more, but was turned down as they weren’t on repeat. So I had to wait nearly a whole week to get some more! As I predicted, horrible headaches came back after a while without them. Insomnia was back too as well as leg pain. Just when I was starting to feel human again, I ran out! Anyway, my GP gladly prescribed me more and put them on repeat so I can continue with them. Never been so excited to take a tablet in my life haha. She asked if I had read the information she gave me last time on Fibromyalgia, which I had. I said it sounded like someone had wrote it about me, every symptom fitted my life. She said she agreed and has referred me to a rheumatologist and I will get an appointment in the post. I’m used to waiting by now so this will be a breeze.

I had my routine blood tests last week too, took the little lady and she behaved beautifully. She even had 3 nurses all talking to her and commented how polite she was, while another took my bloods. She knows her way around the hospital like the palm of her hand by now, zooming from one corridor to another, apologising to the ladies who she bumped into 😂 crazy but polite at least.

Today was my 6 monthly hospital appointment with my consultant and my trial nurse. It was lovely as always to see Karen again with our usual catch up. We realised I only have another 18 months or so left in the trial! 4 years have gone super fast. Mr Balfour showed me my levels on his screen again, telling me that they are continuing to be perfect which is good. He felt my neck for any new lumps or bumps and found nothing. Such a great feeling. I told him about the referral for Fibromyalgia and he agreed that it would explain a lot. It was nice to be able to separate the two and believe for once, that my thyroid levels really are ok and that I’m not just being moany!

I’ve had lots of other bits to organise lately too. In April I am starting a course to become a certified Counsellor. It will take 3 years and lots of money 😖 and even more hard work but finally my career is taking off… again! After 4 years out and a part-time job I hate, I’m so excited for what the future holds. I have found out that my time spent at uni and all my hard work with placements and assignments haven’t gone to waste either, as they count towards another degree. So my goal is to complete this course I’m signed up for, qualify in that then continue onto the Bsc(hons) in Psychology and Counselling. I will bloody get my degree!!

Life is pretty great right now. Positivity pays off. Life is hard, at times you really can’t see yourself getting back up. But you do. Even stronger and better than before. Whatever life throws at me now, can’t be as hard as the last 4 years so bring it on 👊🏻

Thyroid

January is Thyroid Awareness Month

Happy New Year!

Christmas was amazing. So much quality time with the people I love, I’m sad it’s over!

This is a bit of a moaning blog today, sorry! But it’s these raw accounts of my life that I want to document.

I have found it so hard this year to make sure everything is just right, from stocking fillers to making sure we have enough carrots for the reindeer. The late nights, stress and worry have certainly taken its toll on me this week.

I am exhausted beyond anything I have felt before. My muscles ache, my mouth is full of ulcers (£5 for bonjela, when did that happen?!) My headaches are in constant mode, not a full on migraine, but there all the same, niggling away, reminding me that I dared to have fun. Pins and needles in my fingers are all too common again, its just normal for me now. I feel like crying today, but instead I have to go work. Speaking to customers, pretending to be ok. Sometimes it’s all too much. I just want to hide away in my bed, watching old re runs of friends but money doesn’t grow on trees.

I have my next GP appointment on 16th Jan to talk about what happens next. Then my 6 monthly appointment with my consultant and Clinical Trial Nurse at the hospital at the end of the month.

I am on so many tablets now I’m not sure what is a side effect of what.

The hardest part is trying to explain how I feel. I feel like I just moan all the time and because its nothing physical, its hard for others to understand. I have the most amazing husband in the whole world, I am so lucky. He just gets me. He knows when I’m feeling shit, he probably doesn’t understand fully, but he doesn’t pretend to either. He just lets me know he is there and does anything to make me feel ok. I really am super lucky.

My blog is the only place I moan and sometimes I do hesitate to write how I really feel. If I am asked how I am I will always say I’m ok because its just easier than explaining the truth.

As the title suggests, January is thyroid awareness month. The small butterfly shaped gland at the bottom of your neck, which seems so insignificant, but has single handedly changed my life. I never knew what it was, let alone what it does.

Also

Here are just a few of the symptoms of hypothyroidism and hyperthyroidism. If you think you may have a thyroid problem, go to your GP and it’s a simple blood test.

Also this month marks 2 years of my Cancer Support Group! A small tiny idea one evening, now a huge success with over 120 members. Quite an achievement!

So as much as I feel shit, something positive has come out of all of this.

2018 is looking exciting. Watch this space 😉

Thyroid

An answer to my questions finally?

So it’s been 5 weeks since I started my new medication and I had a check up today with my GP to check my progress and work out our next step.

The Amitriptyline is an anti-depressant, but I was given it for my headaches, along with Cerelle which is a contraceptive pill. I thought it was a strange choice for headaches and pains, but they are working!

I have only had 2 headaches in 5 weeks, which has been amazing.

My leg pains have decreased, they are still there but much more manageable.

I’ve not had any pins and needles or numbness in my hands and fingers.

Insomnia is no longer a part of my life! From the first day of taking the Amitriptyline I slept all night! I was starting to forget what that was like! I ran out of tablets for a day (typical me and my forgetfulness!) and that night I couldn’t sleep. Im not sure if it even works that quickly, I remember from my training that anti-depressants take around 6 weeks to work, so its unlikely that it was due to this, but I took a tablet the next day and slept all night again.

My brain fog has cleared altogether. No more zombie mum on the school run!

Fatigue is at an all time low, which is amazing. I feel my age again and not an old lady! I managed to watch a whole film without falling asleep! Result!

So with all this good news, my GP said she wants to keep me on the same meds and doses and give it another month, then to go see her again.

She mentioned about a condition called Fibromyalgia, which I have heard of before. It is a chronic condition of widespread pain and profound fatigue. My GP gave me some information to take home and read before my appointment in January. She said the next step will be to be referred to a specialist who can assess and possibly diagnose.

Lots of mixed feelings tonight. It’s so nice to possibly put a name to how I have been feeling and to validate thats it isn’t all in my head. But another diagnosis of a chronic condition? Really? Mother Nature sure gave me a shit body!

I’ve read on so many of my Thyroid groups about how common this condition is, especially in people who have Thyroid problems. Comforting I suppose, but frustrating to think that 5 years ago I was so healthy and never had any problems, now it feels like my body is falling apart!

So I will carry on with the millions of tablets I take each day and wait for January. At least on these meds I can look forward to Christmas with my not so little family, without worrying I’m going to fall asleep or be in too much pain.

xxxxxx