Doing stuff for me!

Hey my beautiful followers old and new!

This week has been pretty busy for us, I’ve not had a chance to sit and chill out. So, we have a family wedding to attend this weekend I wanted to get my nails done so ensured to put money aside for it as I booked in advance. I last minute got booked in with my hairdresser, I wanted a trim as my hair does grow quickly and I want to keep it short as it’s so much easier to maintain for me! I also decided to get my hair recoloured, I wanted purple hair for a while I just didn’t have the balls to do it, then I reminded myself that I can either live my life with regrets or just go for it. I’m glad I did! I have lush purple colour with pink running through it. What I also discovered was my hair matches the colours in my in-laws living room which was a laugh, I’m sure I’d be useful for when they need to get new furniture or paint for their living room.

My lethargy has been a lot better! I believe vitamin D has helped a lot with that. I’ve been able to stay awake more, and slowly getting back into my usual routine. I did have to cancel yesterday’s driving lesson due to the sheer pain in my knees, it’s difficult to describe but it felt like deep bone pain? It was awful! I took tramadol and it didn’t even put it on the edge at least, fortunately it’s not too bad af the moment as I’ve kept rested up after being out.

 

I am booked in to see pain management clinic in next couple of weeks, of course I will keep you updated with how that goes. I am proud to see my bio now in the fibrosupport-Wales website, I’m proud to be part of this wonderful team and love my fibro family. Their goal is to become a charity and I am with them every step of the way!

I done my balance test in hospital, everything came back normal; so it’s now the case of is it migraine or fibromyalgia that is causing the dizzy and faint spells? They gave me some advice on coping with my tinnitus which is awful in the night or quiet room. The balance test was mostly watching my eye movements with some simple tests which did leave me feel very dizzy afterwards which is completely normal. From falling back quick (they had full support on my head) to wearing these sexy goggles watching a dot moving back and forth.My husband and I stopped by at cafe in hospital to help me rest up before heading back home.

I know I’ve done soppy posts before, honestly I have an amazing husband, he’s been fantastic when I’ve been lethargic and sore. He has been sorting out the children allowing me to rest, that’s why we are honoured to be offered a free holiday I feel the children deserve it more than anything. So we have that to look forward to in couple of months. My husband has helped wash me as I’ve been too sore and lethargic to do it, I hate being that  bad where I’m sat in a warm bath whilst my husband runs shower over me and washes my hair and body for me. He doesn’t get fazed by it though, he’s always been the same with me. I also love how I can talk about periods and other womanly things as he can about his manly things lol! We are comfortable with our bodies, like when I’m sterilising the menstrual cup he offers to do it for me. That may gross out some, but to me that shows how much he loves me, as he says he’s seen me birth our three beautiful children. Having a supportive partner like that does help a lot when you are battling an invisible condition. I am so lucky to have a man like him.

 

Xxxx

So that’s why I got another flare up!

Lethargy had finally sodded off, I felt a little better. I decided to walk the puppy with my husband, we had a good hour walk. My husband treated me to a meal out to celebrate my birthday, it was a lovely treat! My wrist is very achy at the moment so wearing a wrist support. I was in tears after as my legs were killing me! Such intense sharp pain penatrated through my knees. I couldn’t sit comfortable, soon as we got back home my husband ran a hot salt bath for me, he knows when my pains are that intense I have a hot bath as hot as I can cope. I then lay down straight after. My husband sorted our children’s lunches and kept up with house work for me. So I had my tramadol, got my legs elevated only to be woken up around 2am due to the pain. I wanted to scream, claw my eyes out, saw my legs off… you get the picture, it was fucking agonising! My husband rushed to get my tramadol and bottle of water from the fridge. I finally settled down again, only to wake up again. Pain isn’t too intense this time round, I believe I probably over done it as I just got over a flare up to then go for long walk as I did. 🙈 I’m more than likely going to be using my crutches today to get by, I have my course to do as well. The joys eh?

heres some photos I took yesterday:

What you see is what you get.

You’ve probably heard many say this, it’s been probably plastered on people’s pages.

I am a pretty open being though, I don’t have anything to hide, ask and I will say. I am truthful with my feelings, although sometimes I may hide them in fear of upsetting others. I like the way I am.

Im starting to get better from this flare up,  it started after Christmas, I’ve spent most my days using walking aids to get by. When I felt not too bad, I done little walk when I could. My eldest took this photo of me, my dog has been pretty much attached to me, I’ve been substituting my hot water bottles for him. I’ve been lethargic and nauseated due to the excruciating pains. I may look fat and lazy to an outsider, those who know me well have seen my fluctuation with my moods and pain.

One thing that I am also proud of myself is, I’m an amazing mother. This sounds so big headed, but I’ve always doubted myself, had people knock me down, had stories twisted. My eldest had learning difficulties that despite all my hard efforts and nagging, school were taking credit for my child’s achievements. It’s all good,things have moved forward and my child is getting the right support they needed. I’ve never been a bad mother, I should of never self doubted myself. I get so many compliments from other professionals my favourite being how they can tell my children are from a loving and caring home. I always give out compliments to my children, they know their manners, are affectionate and simply the most amazing little humans ever! It’s difficult being a parent with this condition, it’s exhausting and certainly more challenging, so seeing my children grow into their own amazing little characters shows me that I’m doing a good job. Even if I’m tired I still find time to sit and read to them, play board game or their toys with them. It’s good to recognise your strengths and be proud of yourself. We are our own worse critics.

I have taken back control of my own well-being, it’s been a long path however I’ve succeeded. No more worrying what others think of me, living in the moment and not the past has helped. No longer holding the grudges that we’re holding me down, and no longer having to explain myself to anyone. This world is already full of so much hate, it’s so draining, it wastes so much energy thinking and treating others negatively.

people will always talk about us, good or bad, it’s up to you if you want to go back and dwell on it, or to carry on moving forward in your life.

x

Marie Curie UK

My birthday is on 10th January, and I’d love to collect small donations to this wonderful charity. I’ve witnessed the compassion , the hard work, they supported us all through such a difficult heartbreaking time. I’d love to make a donation no matter how small as a thank you.

 

if you wish to donate here is the link:

https://www.facebook.com/donate/377428629744137/?fundraiser_source=external_url

I ache 24/7

I ache from the top of my head all the way down to my toes. I get tired of hurting, I get tired of explaining myself, I get tired of ignorance, I’m sure many are tired of reading and hearing about my struggles. Welcome to my life, this is my struggle and I have to live with it. I’m not asking nor do I want sympathy, I’m doing okay. I share my struggles in hope it helps others understand, but to also show those who are suffering from any invisible conditions that they are not alone. Those who are struggling to get out of bed having no motivation due to the sheer pain and exhaustion, I get days like that too, it is not laziness.

Those of you who are in pain every day, listen to your body and don’t feel bad for needing to rest or cancel plans. If we don’t rest, we will fall into a downward spiral never being able to pull ourselves out of it. Find people who understand and will listen, ignore those with narrow minds. Your pains are real, you would love for these pains to vanish, you wish that simple exercise and change of diets would work. You hold onto those old wives tales as they may have a placebo effect on you. You curl into a ball at night with tears flowing down your cheeks, wondering how on earth will you be able to cope with this condition for the rest of your life. You don’t wake up your spouse sleeping next to you, or pick up the phone to call someone close, because you feel like a burden. You cry in frustration when you hear or see arrogant comments being made from people who have no understanding of the pain we go through. You sometimes shut yourself from the world because you don’t want people to see you on your really bad days. You get that burst of energy, that sweet, sweet release from the burden of stuff joints that you go on a cleaning frenzy. You waste that energy on things you wanted done as you never know when you’ll get that energy back. You put on a smile, you laugh, you talk away as if you are in no pain at all. Truth is, you are used to it, and we have become good at hiding our symptoms.

parenting with this condition is hard too, you feel useless parent on days you are unable to do as much. Whenever you see that concern look on your child’s face and they can see through your fake smiles, you feel defeated, you feel guilt, you try to over compensate with taking them out and getting them stuff. You need to realise that they just want time with you, and only you as they make the most wonderful memories. You get those dark thoughts and as you snap out of it, you look at your child and you punish yourself for ever feeling the way you do. Your memory is awful, so you use post it notes on the fridge alongside forms that need to be filled in, what days they need their pe kit for school. You walk them to school no matter the weather and fight back those tears for fear you will be stared at, the worse thing isn’t drawing attention to yourself. You kiss your beautiful child and tell them to have a good day in school. But that odd day when they turn around and ask a question like “are you in a lot of pain today?” It leaves you feeling terrible, you don’t want them to remember you being in pain all the time.

being a partner husband/wife with a chronic condition is hard. You feel guilt if you find it too painful to have intercourse one night, even if they assure you it’s okay. You feel guilt, you feel annoyed and alone due to it. You know you are a team, you feel like a burden when they pick up your slack and help you. They don’t see it as a burden, but we do. On flare ups they help wash and clothe you. You feel guilt as you won’t be able to help them as much as they help you. You reassure them when they are down, you pick them up and help in any way possible, but you still question why they stay with you because you are in so much pain and they end up running around for you.

working with this pain, this exhaustion is so freaking hard too. As it’s invisible coworkers may see you as over dramatic, you feel you are a burden on them, you try to stay awake, you try to remember what you were last doing, you start getting pains in your hands as you type/write but you need to keep going otherwise you’ll forget all that information. During a flare up if you succeed into work the time painfully goes really slow, you will have a lot of absents due to unpredictable flares, which in return can bring up meetings in work, you miss out on bonus pays as you had too many sick days. Your employer tries to help in so many ways, but your health is a bitch and you have to decide to carry on this way or leave. Your rest days are literally that, you sleep on your days off and the days awake are spent in work your pains exhausts you.

 

living is hard when in pain 24/7, it’s like having a constant flu. It never goes away, carrying heavy chains around you that tightens on each step you take, it also burns, it tingles, it’s sharp shooting pains. You question if death is the best way out than suffering in this pain.

I have an understanding of how you feel, as it’s what I go through. You are stronger than you believe, don’t over exert yourself I know easier said than done. If your body is tired and sore, when you find time to …sleep! Don’t feel bad for it you are not lazy, your body needs it. Don’t fight it as that aggravates your symptoms. Ask for help, be it friends, family, neighbour, support workers etc… you will be amazed how much help and support are out there. There is support out there for everyone, you have to be the one that looks for it. This pain won’t ever go away, but we can learn how to cope with it better. Take small walks when you can, try doing a small walk at least once to twice a week and build up from there. Inhale that fresh air. Vent about your symptoms to a person, in a diary or even a blog!

Join local support groups on social networking sites with people who suffer the same condition as yourself.

having an invisible illness is hard as we have so many judgments as we look okay. If we weren’t so quickly judged we’d more than likely be able to cope a bit better.

I spent a year feeling sorry for myself, I was able to pull myself up. I’m now learning to drive, doing courses, getting all the help and support I need to not only help manage my condition, but so I can cope with it better to help my children, and to go back into work and a career I am passionate about. Health professionals strongly advise I’m not ready to go back to work, and I’m now following their advice by taking small baby steps. I’ll reach my goals in life, but first I have to be more kind to myself.

You got this, I believe in you, don’t give up.

xxxxxxxxxxxxx

Happy Birthday To My Husband. X

I’m proud to call him my husband, he’s stuck by me even at my darkest moments, never fails to tell me he loves me and kiss me everyday. Means so much especially on days I feel low. This man is the reason I’m no longer ashamed to be open about my mental struggles, why I’m no longer afraid to ask for help as I’ve accepted I need it.

Anyhoo, I won’t go too over the top on mushy stuff.

today is his birthday and unfortunately we are very busy so won’t be properly celebrating it till tomorrow.

Happy Birthday to the man who helps monitor my blog.

love ya

xxxxxx

Driving, deadpool, baby shower and diamond painting…

Hi beautiful bunch of awesome beings you!

As promised, here is a post on my busy weekend!
I was wanting to update sooner, however there was an incident that my husband and I had to help out with. It’s all good now.

So my driving is coming on a lot, I’ve been driving on busy roads, and round abouts then driving myself back home. I’m so pleased how much I’ve come on considering I’ve had to cancel a couple due to my health as some days I’m in great pain. I’ve decided to reach a goal on passing by test next year,rather than focus on this year just in case I don’t pass my test this year; I won’t be so hard on myself then… 😂

We then went to see deadpool 2 with our friends And siblings, it was an awesome night and of course the film was amazing! It was a long ass day for me though, so was very exhausted. The following day I was up and ready to help out baby shower for my godchild. I throughly enjoyed the night and the company and met some lovely people, I’m not normally much of a social butterfly. Once I got home I was in so much pain and ready to go to bed. I got to have a lay in thanks to my wonderful husband, unfortunately I had to be up and ready for my cousins birthday party, so I had to suck up the pain, take my medication and go to the party. My head was stuffed thanks to hay fever, I had such a bad headache so I was owning that resting bitch face. I was such a miserable sod that day, though I perked up near the end as my dad gave me some tablets to help clear my stuffy nose.

We had my father in law down for dinner and to play a couple of games with the kids, we then introduced him to joking hazard (honestly, if you have a sick sense of humour I highly recommend this game alongside cards against humanity!) I was dehydrated and felt sickly but managed to go downstairs and socialise for few hours. Me+ sun = an utter grumpy bitch.

I then completed my diamond painting as shown on my picture. I found it very therapeutic, I love colouring in but sometimes my wrists ache so bad I have to stop mid colouring, I found diamon painting wasn’t really painful and I really got stuck in.

Anyhoo, I’ve got busy few days now as I’m needing to pack a bag for overnight stay we are treating the children to couple days out. 😁
X

Sup?

To my new followers and the casual browsers.

Thank you, because each click, each view, each interaction brings in high traffic. So wether you are a person also suffering, or know someone who’s recently been diagnosed, even if you a sceptic. I tend to post when and as often as I feel the need to share things. It doesn’t always have to be fibromyalgia related, because let’s be honest here…how fucking tedious is that? You will learn that I can Ben one of the quote loving hippy, I will share many positive quotes because to me they help create an awesome positive vibe…ya get me?…probably not. Being as I was raised by geeks, I love my sci-fi, super hero, graphic novel shit though one thing I am not a fan of (this is blasphemy here) is Harry Potter. I’m sorry, just nope! I read the first two books and got tired of it, I do love reading the hobbit and yet to attempt lord of the rings. My husband is into his Harry Potter, dragons, car and anything with an engine. I educated him into world of DC and marvel not by films I showed him the comics, the graphic novels, and I also got him more into gaming because let’s Be fair, there’s more to gaming than just sticking to one console shock horror… he never knew anything about retro gaming! he learn so much since then. Now I am pretty vulgar, I’m a short person who knows all sorts of profanities. It’s in my blood though…I’m a Scottish lass ( with mix of English thanks to grandfathers lol!) I’ve always been a tomboy (with my girly moments) I’m not as thick as some may perceive me as, I’m just too polite for my own good to correct a person. I get days where I muddle up my words which has become more apparent since being rings diagnosed with fibromyalgia. Has that stopped me reaching my goals? Fuck no! Only made it a wee bit more challenging though.

If you were to speak to those who know me, they’d tell you that although I can have a morbid humour and vulgar language, I’m actually a shy person (till you really get to know me) I’m random kind heart, and do put others emotions ahead of me sometimes which is both a pro and con there. I used to be pretty active, I done cross country, walked for miles, and swam. Then this wonderful condition grabbed hold of me, so I had to learn how to adapt, and yes I spent a good year feeling sorry for myself. Which by the way is completely normal, everyone would be the same. It’s when I started to do this blog back in 2014. I essentially used it as a diary, going through things what worked and didn’t work. In that time of doing this blog, I had another child, I left a job, I moved into a bigger house, I got married, my husband has got a career allowing me breathing space to build up this blog. Because it’s something I’m not only passionate about, but I know I’ve helped some of you wonderful beings, and as I’m learning to self love myself more (soz, hippy talk) I’ve shared some useful tips to help love yourself more too.
This blog shows how far I’ve gotten where I honestly never thought I’d get to. I’m a strong believer in karma, now it’s hard to stick to positive thoughts, but being kind, keeping positive does honesty pay off. You feel so much better as a person.
There’s a few things I’ll be working on this year to help build up this blog more, suggestions are more than welcome. Share blog away, if I can help people who recently been diagnosed showing them that they can get through this, it’s okay to have shitty days, it’s okay to cancel plans. Don’t let this bitch of a condition stop you reaching your goals in life, don’t let it rob you. Accept that not everyone is going to believe you (as painful as it can be) keep your chin up, you are not and never will be alone. I’ve met incredible people who’ve been a great support network.

So I suppose this random post is me basically saying…thank you, keep strong, be kind; and be ou will look beautiful throughout.

We got this bitches. 💪🏻
Amy
X

P.s my grammar is awful due to using my mobile whilst awaiting for a new laptop, it’s annoying me but I’m sure you lovely people get what I’m meaning.

Maturity

It’s been a good year, dealing with highs and plenty of lows. Focusing on my wellbeing, and my little family.
I believe I’ve hit that point in my life, where I no longer focus on the things I can’t control, like how others view me. I keep a good distance from negative energy, as it’s draining. I’ve learnt my happiness is way more important, we all have a life that we certainly don’t want to spend it unhappy. I’ve pushed back negative thoughts, and refuse to get involved in drama that includes speaking about others behind their backs in such a negative light. Whenever I’ve had some try to bad mouth a person I tend to change topic or ask how they’d feel if such words were spoken about them. Now we are all entitled to a rant, absolutely. My mother she’s my best friend and pisses me off sometimes the feelings mutual with her. We respect each others opinions and are open on our feelings. I can put this down here as she reads my blog and she would tell you the same. Sometimes little things that people do can be very bothersome, so we vent it out and it feels so good to let out some steam. So long as nothing malicious is said. It’s harmful to bottle up your feelings, it could be something very insignificant but will build up in time.

I never have a go at someone based on what I’ve heard, I’m not type of person to hurt others, I avoid conflicts because life is too short and I hate being in an awkward situation.

This year has done me a world of good, I’m feeling happier in myself and I pay no attention on those who try to cause grief.

I must be doing something right as my children are full of love, and positives, as we are a very positive household.

Life is short, live how you want to don’t ever let anyone try to pull you down.

Birthday aftermath

My partner and I have had such a busy week, we’ve been non stop. Both us very tired and sore. We put our feelings aside and threw a wee tea party for our child’s birthday. Just close friends and family came over to celebrate. Our child had an amazing day, we left some bits to pick up the following morning. So here’s the aftermath we laughed as it’s not much of a mess and talked about what their 18th would be like, far worse than this we imagine. My partner is working all day today, so me and the children are going to have a lazy day. Hardly any house work to do so hopefully mother’s day will be as chilled. 😁

I’ve been on my feet all day yesterday, I’m paying for it now. My siblings and friend lectured me as they reminded me they are only up the road if I need them. I’ve said it so many times now, I am so fortunate to have that kind of support. I know many in my situation doesn’t have anyone they can fall back on when they are in excruciating pain. It can get really lonely suffering with a condition no one can see leaving you to feel as though you have to prove yourself. I would love to wake up and not feel any pain, I do gentle exercises, eat healthy, take different pain killers, even though they can ease some symptoms slightly it doesn’t take away my pains. Who knows, maybe one day there will be this miracle tablet we can take and it takes all symptoms away.