stiffandtwistedsisters

[stiffandtwistedsisters]

So far today I've: *Had to check 5 times that I put the signed consent form for my daughter's school trip in her bag *Had to check my doset box about 5 times that I've taken my meds *Put my son's cereal bowl in the food recycling bin along with the toast ends *Checked I locked the door at least a dozen times so my toddler can't escape *Lost my vape... 4 times (at least) *Made 3 brews with cold water because I didn't boil the kettle *Used the last of the butter at breakfast, wondered why I couldn't find any butter at lunch time *Lost my phone 5 times (at least) *Forgotten to lock the door after my daughter got home *Had a massive anxiety attack about the "what ifs) over the door being unlocked (Alex was safe behind the baby gate and in my arms having a feed - but that's beside the point lol) *Microwaved 2 of the cold brews twice each - once because I'd forgotten I had already done it and the other because I forgot it was in the microwave *Wondered for ages why the view from my patio door looks so different (took me an age to realise that a fence panel has been blown out) *Microwaved that 3rd cold coffee a second time (because I forgot about while writing this post) Just another day in the life, right? 😂😂😂 Love and gentle flutterby hugs Jess xxx 😘💜

[stiffandtwistedsisters]

A Trying Winter

I know that none of The Stiff & Twisted Sisters have posted anything for what seems like a lifetime. We've all been suffering and/or going through the mill in one way or another.... I'm sure in the other sisters will share their stories when the time is right for them, but here is my tale ... My daughter started school in September. As the weather started to turn the school runs became harder and harder. But eventually, I came to an arrangement with my sister-in-law and now she drives the kids in and I collect them. It is an arrangement that has had it's issues, but is now working well. And on days like today when the weather is absolutely terrible, she and my father-in-law drove up to collect them all too! This winter my pain levels have been at an all time high. I can't decide whether my fibromyalgia is progressing, if the weather has just been perfect to set me off, if the trying time we've had as a family has been a catalyst for the massive flare that seems like it's never going to end, or if it's a combination of all of the above.... 2 days before Christmas we lost my partner's Nan. She took a very sudden downturn and thankfully she passed quickly and didn't suffer too much. Of course though, this put a massive strain on everyone. It was also a very confusing time for my then 4 year old. She had many questions that I don't really have answers to. And it was hard for us, trying to make Christmas the magical time it should be for children, while greiving. My toddler son has been ill, teething, ill, teething, ill and back to teething again - he's still only got 6 teeth so I have a feeling that we are going to get a whole load of teeth through at the same time.... Which means that at times my sunny little boy is replaced by a totally inconsolable grump-bag.... This is a very, very rare thing for me to say but at least the pain-somnia is actually a benefit right now because at least the teething isn't interrupting any precious sleep! But not everything is doom and gloom... Hopefully Spring is around the corner... The crocuses are out in my garden, and I have 1 solitary daffodil too. I finally have an appointment with a pain management clinic, which I think I've been waiting 6 months for... And even better than that.... I've just realised that the appointment is next week!!!!!!!! On the whole though, even though my pain levels have been at an all time high, and my physical health has been at an low... And I know that at times I've been a grumpy, moany-arsed, old sow, I am trying to adjust to this life I now have. I'm trying to accept the new me. The me with chronic pain and chronic fatigue. I'm trying not to let these nasty things beat me. I'm not even 40 until next year! I realise that I'll probably never climb Mt. Snowdon or anything like that... Not that climbing Snowdon was ever anywhere near my bucket list, but you get the drift. But I'm trying to organise my life as best I can. Slowly but surely, I will get on top of stuff that has been put aside over the winter. I'm going to try and use the spoons I have as wisely as possible. Yeah, I know that life will throw things at me, mess up my plans and good intentions at times. But that is life. That would happen chronic illnesses or no. I'm going to play the hand I've been felt as best as I can. I have to if I'm going to be the best example and the best mummy I can be to my babies! And thanks to my sisters I have people around who truly understand what I go through on a daily basis. My sounding board, support network, my Spoonie Brethren. As well as my little family who love me and need me. Although it's been a trying time, I'm still here! So as I sit here in my lounge pants and massively oversized jumper, I say Chronic illnesses - you will not win! You may knock me back at times, but you will not win! I am A Chronic Pain Warrior!!!!! Love and flutterby hugs Jess xxx 😘💜

[stiffandtwistedsisters]

I've been on a journey with chronic pain since December 2009 when in a horrible car accident. In November 2015, I was diagnosed with Fibromyalgia (and several other conditions that fall under the umbrella of FMS). I started therapy in the pain clinic at the end of November 2015 that specialises in chronic pain. My therapy journey will be ending soon. Fifty weeks of therapy (by the time I am discharged) and from where I was then to where I am now there is a major change. So yesterday I treated myself to a tattoo of an anchor with an infinity sign and a heart. It has a very special meaning to me. The anchor is the reminder that I refuse to sink. The infinity sign is the reminder of time. The heart is strength, love, and self compassion. All things I have learned while in therapy and things I will continue to carry with me forever. I am so thankful for the journey I've been on. I've met amazing people, gone through some very hard times, had the most wonderful support network, and I'm ready to move forward. My husband, Nigel, has been my rock and I can't thank him enough for everything he's done for us and everything he continues to do. Life will move on, I will not sink, there's all the time in the world, and I will continue to love and be compassionate towards myself.

Flutterby hugs and lots of love 

Jenny xx

[stiffandtwistedsisters]

How much do you tell your kids about your illness?

When you are a chronically ill mummy with young children there are a lot of difficult choices and decisions you have to make but for me one of the hardest decisions is how much and when you tell your kids about your health issues. I found out last week that things have taken a turn for the worse with my crohns disease and it is likely that I will now need surgery. Tomorrow morning I go for an urgent mri scan which should determine what happens next. My son knows that mummy has a poorly body (fibro) and a poorly tummy (crohns) but he does not know that my crohns has now become life threatening. He knows that mummy is going to have special pictures of the inside of her tummy taken tomorrow but he does not know yet that mummy might need an operation. One of the things I struggle with is when to tell him what's happening with me and how much to tell him. Do I tell him I need surgery as soon as I find out or do I wait until a week or so before I have it? Do I tell him that mummy will be fine or do I tell him that mummy might get poorly after the surgery? The biggest thing I'm facing at the moment is the possibility that I could get worse and there may be nothing that can be done to help me. How and when do you tell your 5 year old that you are dying? I know this post has been mainly focused on the problems I'm facing with my crohns but I think it applies to fibro and any other illness too. We spend so much time at the doctors surgery or the hospital or having tests or dealing with side effects of medication and kids pick up on these things and worry. So how do you explain what's happening in a child friendly way without lying to them? So fibro mummies how do you deal with this problem? What do you say to your little ones and how close to the appointment/test etc do you tell them about it? Flutterby hugs. Bea Xxx

[stiffandtwistedsisters]

A Twist On The Spoon Theory

I find that my OH has difficulty with the Spoon Theory. I think it is because he thinks that the spoon drawer is replenished each and every night. I needed to come up with a scenario he could relate to and understand. As he's a gamer this is what I came up with: I'm in agony. Every time I feel slightly better I do something I put myself backwards! I got and trek round the park. I do a BBQ for the family. I go shopping for children's clothes. I go to my dad's house for dinner. I know you think these are all perfectly normal activities, and to most people they are. But for me, or any other person with a chronic pain illness, think of it like the energy bar on an Xbox game: Just getting out of bed depletes my energy bar. Then getting breakfast means again, I take a hit. Then transferring the food and everyone to the table is a hit. Then feeding a baby, trying to get a preschooler to eat nicely or sit down properly, is a hit and that's not counting feeding myself, because that's another hit. Then finding clothes for everyone and getting everyone ready is a hit. Then the baby will do a poo and need changing - hit again. Then baby will be wanting his sleep so carrying him to the bedroom is another hit. Then preschooler will want me to play - again that's a hit. With extra hits if she wants me to play on the floor. Then baby will wake up and he'll be sad or grumpy - carry him to the lounge and cuddles, I'm hit again. Then it's time for lunch. Getting to the kitchen is a hit. Making lunch is a hit. Add extra hits if the kids are crying and/or arguing and/or preschooler is moaning about the lunch choices. Transfer plates and cups to the table and I'm hit. Get baby stripped down for lunch is a hit. Get everyone to the table is another hit. And this is all before eating lunch! People with chronic pain have this energy bar because they don't sleep well, have disturbed sleep and non-restorative sleep. And sometimes the bar isn't totally refilled over night because of the non-restorative sleep. How big is this energy bar? How many hits can one person take before they physically cannot do any more? Flutterby hugs Jess xxx💜💜💜

[stiffandtwistedsisters]

This is what it looked like when André the Giant held a 12 oz. beer can. 

Apparently (and obviously) it took A LOT of beer to get him drunk. He could’ve drank every single one of us under the table, if he would have fit under tables…

… but he did not.

Source 1          Source 2

[stiffandtwistedsisters]

Routine - Good of Bad...?

I have a routine in my house. I find it is beneficial for the children and it helps me too. It isn't totally ridged - neither myself or the kids go into a meltdown if it gets to 11:32 and they aren't eating lunch. It's more like... They wake up between 6-7 (on their own, I don't wake them). They eat breakfast around 30-60 mins after they get up. Lunch is somewhere between 11:30-12:30 Tea is somewhere between 4:30-5:30 And bedtime is 6:30-8ish I find it also helps me. I can rest in between the busier times. It helps me to pace myself. I can plan the day and both me and the children kind of know what is coming up. Of course special days, holidays, day trips etc will mean that the routine as such goes out of the window. The only thing I try to maintain is the time gaps between meals because both my 2 turn into monsters when they are hungry! There are some members of the family who think I'm too fussy about the routine and kids should just do what they want... My kids do have the chance to play, explore, laugh, and be children in between the semi set times for meals. They are happy, healthy and confident, with bloody good appetites lol What do you think about routines? Do you find they help you, your children or both? Or do you find that being free from time restraints makes for an easier life? Flutterby hugs Jess xxx💜

[stiffandtwistedsisters]

Flutterby Hugs xxxx 

Jenny 

[stiffandtwistedsisters]

True

[stiffandtwistedsisters]

Should we be glad to grieve our old life?

Should I be glad that I'm grieving for the person I was and the life I had before getting sick? This is something I have been thinking a lot about over the last few days and I think the answer is yes. I think I will always grieve for the life I had before fibro. I will always hurt, be angry, feel guilty and cry for my previous life but those feelings remind me that I have something to grieve for. I was lucky enough in my first 21 years of life to be healthy, to study, work, exercise and play and I will always have the memories of those times. If I had been born sick I wouldn't of had those experiences and I wouldn't have the memories that I grieve for now. So I consider myself lucky to have the privilege to be able to grieve for that life. Having said all of this, it doesn't change the fact that I will always hope to one day get the old me back and be able to experience that life again and it doesn't make my grieving process any easier and I certainly don't see an end in sight for my grief but I am now more accepting of my grief. So, what do you think? Do you think we should be glad that we are able to grieve our old lives? Do you think the grief will ever end? Have gone through the grieving process and come out the other side or are you still going through it? Flutterby hugs. Bea. Xxx

[stiffandtwistedsisters]

This is something that I am still learning to do and to be honest I think I will forever ask myself the question "Am I sick/hurting enough to do/not do this?" It is sad that I will always try to justify why I can or can't do or use something and I'm not just justifying it to others but to myself too. I honestly believe we do this because of the stigma attached to fibro and one day I do hope that changes. Last week I took my kids to our local zoo which spans across 85 acres and is all on hills. I knew there was no way I could walk it and that I would need to hire a mobility scooter but I still found myself justifying and questioning it. Maybe I can walk it? Maybe I should just push through the pain? What if people stare at me? What if people think I'm faking because of my age? I even found myself explaining to the lady at the customer service desk what was wrong with me and why I needed the scooter! So I am setting myself a goal to reduce the amount that I justify myself and the aids I use to make life easier and enable me to be a better mum to my kids. Flutterby hugs. Bea. Xxx

[stiffandtwistedsisters]

It's been a long, hard few days for each of the Stiff and Twisted Sisterhood for various reasons. Family or friends visiting, travel, family get-togethers or the end of family visits and the sadness of saying goodbye for another year. My sisters have helped me through, with kind words, thoughts and reminders of all that is good in my life. And I hope I've been able to make a little positive impact and been a little help to them too. I thought I'd share some spoons, along with a reminder that there is always love, peace and hope somewhere. You can find love and peace in many different ways. Your friends and family, your children, a hobby, meditation, through social media, spending some time alone with no TV or interruptions to just organise your own headspace. And there has to be hope. If all hope is lost what is left....? Flutterby hugs Jess xxx💜

[stiffandtwistedsisters]

This would be me today, if I found an extra spoon. Spoons are massively in short supply! Too cute not to share though 😀 Flutterby hugs Jess xxx💜

[stiffandtwistedsisters]

Not entirely sure why, but I'm feeling a bit down today. I'm heading rapidly towards a flare and it's getting to me. To be honest, I've been fighting off the flare since my Mum left last week. We had an amazing month and she was such a massive help to me with the kids and around the house. Now she's gone and I know I won't see her or have a "Mummy Cuggle" (as my daughter says lol) for another year, and it's weighing heavily on my heart. At least it's school holidays so my partner is off to help. And I'm sure he will be a great help when by the end of the week I'm laid up in bed. I chose to post these pictures because of the melancholy state of mind I'm in at the moment, I felt like I needed some motivation and positive words of encouragement. I also wanted to share, in the hope that if anyone else reading my ramblings is feeling low, lost, sad or lonely that you realise that you are not alone. You are loved. You are important. And most importantly... You can do this! Flutterby hugs Jess xxx💜

[stiffandtwistedsisters]

Having spent nearly 8 years living and working in Thailand, Buddhist principles became a big part of the way I live my life. This message is an important one for us all. Flutterby hugs Jess xxx💜

[stiffandtwistedsisters]

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[stiffandtwistedsisters]

I've been distracted from colouring recently because of visiting family. But now I'm able to pick it up again. Most of these where finished before my family arrived. The Toucan was my only real project while my Mum was here. And at least one of them I've noticed still needs a little more work/finishing touches. Hope you like my work though xxx