Venting post with a plea for advice buried in it somewhere

[12Chrissy34]

Along with many ~vulnerable~ people, I'm sure, the background noise in my brain is no longer a terrible radio earworm, but the high pitch tone of a flatlining heart monitor.

I started to get back into running a few months ago with None To Run and it was going really well, until my infusion was due and my knees flared. "No problem," thought I, "I'll have a week off while my next appointment comes up, give the toc a few days to do its job, then get back to it".

Reader, I was punished for both attempting to plan ahead and for cherishing a flickering ember of hope.

That infusion was delayed by a week because my neutrophils were too low.

This month, the same thing happened. Expecting another week's delay, I agreed to do the repeat blood test and wasn't too worried about it. However, this repeat test showed my neutrophils were even lower than before! And that I wouldn't be getting my toc until the consultant had spoken with me. In fact, I might not be able to have toc ever.

Gutted. It's been my wonder drug. I feel amazing on it, with no nausea or allergic reactions or lingering aches (bar a few days either side of my infusion) and I was really really hoping to be on it indefinitely.

So. Back to the waiting game of the consultant time table and trial and error of drugs. While juggling my baseline mental health issues, the impending anniversary of my mother's passing, Christmas, my terrible body image and oh yes, a pandemic.

Plea for advice: I comfort eat when things are bad. And they're bad. My joints are complaining now I'm two weeks behind on treatment plus a history of off-schedule/delayed monthly doses since August. I've had my dreams of running dashed once again. Yoga hurts, tai chi doesn't get my heart rate up, and my weight is steadily increasing and I Hate It.

Does anyone have any tips for weight loss or exercise while a) shielding b) mentally struggling c) incipient flare?

Thanks 🤦‍♀️

[allanah]

Oh Chrissy

You have so much going on so dont add even more pressure to yourself at the moment.

The TCZ well that's out of your control, the consultant will decide what you can have and when but I had a stage where I had to miss a few due to low white cells. But its best he takes stock after all that's why we get the bloods done! So as you are missing the drugs and maybe full of fluid if your joints are gettingvinflammed you'll feel a bit pudgy. This again happens to me , so that the condition and a bit of comfort eating wont make that worse so quickly, so again the consultant will help when you talk to him about it. I bet if you press around your joints you'll see the fluid !,

Comfort eating well you know the drill...lol.. a little of what you fancy does you hood and as soon as you can talk to the doc you will feel less anxious.

So how to cope ... mm... well I dont at times either . No of us do . But I would talk to your family or friends, tell them how you are feeling , talk to rheumy , even show him what youve written here . Lots of people are scared, nervous about the pandemic and especially when you feel vulnerable , i had a very anxious night last night and i know some other friends did. The weather and winter doesnt help does it!,so putting more pressure on yourself will make the anxiety worse.

So you cant do full yoga but i bet the relaxation part will be just the ticket. I would defo do that!

And like you my dad passed on 23rd , ndvmy mum in march and I've just lost my uncle and friend last week, I'm worried about my kids work and not socialising . But weirdly the kids sent me a card, this too shall pass.!! Would your mum have coped in the pandemic, mine would have caused mayhem going out and probably hugging people 😂

So what I'm trying to say is be kind to yourself , talk to doc, do relaxation and we are all here for you ...

[oldtimer]

Oh dear - vent all you you like on here and I hope that it helps. You just have to have a period of time out from worrying about your body and get your mind feeling better.

Even if non-aerobic exercise like yoga or Tai Chi don't help with the weight, they do help with the feeling that you want to eat for comfort. They help with controlling that feeling of being overwhelmed. Even just sitting with your eyes closed and concentrating on your breathing helps with that awful feeling that 'it will never end' and you go spirally downwards.

It will get sorted out and it does just take time. We will all support you on here.

[helixhelix]

My vote goes for relaxation too...helps in so many ways.

But also look up chair based cardio workouts, or chair based cardiac exercise. There are lots of videos available, and perhaps combined with happy music of your choice could help you too.

[Fruitandnutcase]

Weight loss - I’d cut out unnecessary carbs and sugar, fizzy drinks and limit things like grapes, bananas, pineapple etc. I tend to stick to berries - that always works for me.

Exercise - I’d look for gentle seated exercises or get a Theraband and stretch it. You can stretch most parts of your body using one - you get different strengths of them and sometimes they come in sets - I think yellow is the first strength then as you get stronger you can change up.

.

Then relaxation and breathing. There’s a good breathing exercise that we sometimes do in Pilates - you get comfortable then breathe in to a count of four, hold the breath to a count of four, breathe out for a count of four, hold that for a count of four then start again. Very good for relaxing. Good if you can’t sleep too.

You’ve got a lot of so be kind to yourself 💐

[Hidden]

I am similar in lots of drugs not working and waiting game for biologics.

Food I am going through some days full after eating a small bowl of cereal to the next day ravenous but managing some control and just have a water bottle to hand and grapes or bananas

Mentally it was audio books and breathing or small walks around the garden

Some days I rant very well as I limp round the garden with my 2 oa/ra knees grinding away cursing but realise it’s too negative.

So on super bad times I learnt I have to talk to someone and now I do this (not a friend or family for me) and this has helped as I was super low after MTX lefluomide and sulfasazine failed and could not see a light! Spoke to MIND and found my mojo again.

Hugs

[Pippy25 in reply to Hidden]

Funnily enough Dee I too have taken audio books up during this pandemic. I have used talking therapy which have helped me in the past.

[Pippy25]

Hello Chrissy, it sounds like you have a lot of things going on and sometimes it can just feel all too much and we need a release or vent to help us manage. Sometimes things get on top of us and life's events just seem to spiral and it feels one thing just adds on to another and how do we begin to sort or manage with it all. It sometimes feels like we are trying to untangle this ball of wool and where do we start, as more knots and snags have appeared. I am so sorry to hear about the meds and indeed the anniversary of your mum's passing approaching. I have no pearls of wisdom to offer but please know that trying to deal with all things in one go is way too much and taking one step at a time and seeking support from others, be it family, friends or others is a start. Today you have made that start. Take a moment to step back from it all and take a deep breath. Old Timer has given some good advice in respect of our mind and body which have to rely on each other and that listening to your breathing is calming and helps. Then take small, manageable, achievable and realistic steps as to how you can begin to address things. Don't be hard on yourself and take your time. Time is the greatest gift we can give to each other and ourselves. Living in this moment in time which is not great in respect of this pandemic and has the capacity to heighten things, as we feel our way through it. I have found keeping in touch with others so important and also realising while I am not able to do A B or C at this moment in time because of the virus and my RD, I am learning to adapt or find new ways of doing things. Again I am having to adjust my life after decades of caring and then bereavement....and there have been many a packet of crisps, bars of chocolate and kindly/ well intended cakes sent along the way and currently my hair is growing longer by the day as I haven't been able to get it cut since last year! But I am learning to accept for the moment that this is me and in time I will when I feel safe and able to do so take one step at a time have my hair cut and styled, I will make that conscious effort to not eat the whole six pack of crisps in one go and will..... because this will pass and I have so much more to give and do in life, as I am sure you feel the same. I know my health is not great, some of the drugs I have tried have been a disaster and know there may be rocky times ahead as well as good ones. Oh and not to mention I would have to be a gymnast to get the wretched leg brace I've just been given on my leg, but bit by bit step by step I have hope within and wish this for you too. I don't know if my ramblings will have helped but I wanted you to send you my support and as others have said we are here. Take care x

[Ali_H]

Try to ‘comfort eat’ protein based foods rather than carb ones if possible... 80% dark chocolate instead of milk, nuts, little chunks of cheese with crunchy peanut butter; plain yoghurt and berries (less carbs in these) - all in moderation of course 😕

Quirky little bits of exercise several times in the day whilst waiting for the kettle to boil like press-ups off the kitchen counter top, jog as fast as you can on the spot (if jogging is possible); hand on work top and supported lunges, squats and leg swings if kitchen big enough.

Possibly find that book you’ve been meaning to read, painting, home made cards for Xmas, a good meditation app is Smiling Minds (free), do a home spa day.... set up a body scrub, scented bath - candle lit, really light and gentle foods like a warm mildly spicy veg soup; gentle music, light that fire if you have one and bring the duvet into the lounge for ‘snuggle down’ time 😎

All the best

Ali

[LinaM]

Sending you hugs Chrissy! It sounds like everything is hard for you at the moment but try to remember nothing lasts forever so things will improve. In the meantime, like others have said be kind to yourself. A wee bit of relaxation is good but also getting the heart rate up can give you a boost . There are a lot of good chair aerobics free on YouTube ( I like the broken foot workout ) that will really get your heart racing. I also listen to books to pass the time. I love Jason Vales freedom from the diet trap . It’s kind of repetitive( almost hypnotic) but also funny and it seems to stop me eating too much rubbish . Xx