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

How true is this?

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

New tattoo day!

sooo, I got another tattoo! Was going to have Alice in wonderland but fell in love with their Winnie the Pooh design!

Also, I had a really good driving lesson today and working on my manoeuvres now. So pleased I’ve kept up with it and the husband has had me out and about in our car. Some fantastic news for him too so exciting things coming up!

anyhoo, I took advantage of the flash sale at tattoo place I usually go to! 

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

Keep smiling.

Its coming up to the anniversary of my grandmothers death. So naturally, I’ve been feeling low.

her wish was for us all to keep our head held high and smile. Though it’s difficult and how id love to hold onto her hand a little longer, listen to her voice for comfort. I need to let go.

I look back at some old photos of her and it brings me comfort to see how happy and well she looked.

I will miss our phone calls, there was no fooling her she could always tell by my voice if I was in pain or feeling down.

What an amazing beautiful woman I’ve had the pleasure to have part of my life.

So many happy funny memories

xxxx

Fortunate

I’ve said it many times on here now, I’m so fortunate to have a supportive husband, he cooks and cleans especially on days I’m pretty bad.

he always ensures we are all okay before himself, I love him so much and think the world of him.

I’m so proud of the man he is, and how caring, supportive, kind being that he is. This post is for him, because there’s days he thinks very little of himself. He is an amazing person, my love of my life, my best friend, and soul mate. Not forgetting an amazing daddy to our beautiful clever children!

Today we’ve been giving our house a quick wipe over, then heading over our friends for games night as well as cwtches with our godson. Thanks to my awesome brother for babysitting for us. I’ll do an update on my health a later date mainly as we’ve been very busy an

d I’ve got course to do and driving lessons.

Cwtches

So I had been referred to a bereavement service, and signed up to a 10 week art course with them. Unfortunately they were fully booked so at the time I was unable to join, however last minute someone dropped out allowing me the space! I throughly enjoyed it and can’t wait for next week. I loved meeting others who all have similar emotions, we get to express that in art. I’ve done media, photography, so nice to do a different kind of art. Of course I will never be as good as my dad or my sister, it’s something to help with my grief.

Anyhoo, my driving is getting better with very few corrections so that’s another positive!

my husband and I went to visit our friends and god son for dinner. I really enjoyed having a cwtch and giving him his bottle, I even done my friends dishes as I know how exhausting it is having a baby and keeping up with house chores.

xx

Naw

Thought I’d share on here too, so you can post on your social network.

Come on ladies the challenge is on! If you have a man in your life who helps bring balance to your world🌎, who isn’t perfect but he’s perfect for you💏, who works hard 💪🏼and would do anything for you, who makes you laugh😆but drives you crazy🙄, who is your best friend 👫and sometimes your only friend, who you are thankful for 🙏🏼 and truly adore💗, let him have a moment and put this as your status.
(Copy paste and add a picture)💕💕