Vicious Circle: So I started Sarilumab (Kevzara) in Mid... - NRAS

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Vicious Circle

donnalouisec
donnalouisec

So I started Sarilumab (Kevzara) in Mid June it’s a fortnightly injection you do at home. I had my first blood test 6 weeks in & it’s dropped my white blood count dangerously low, just like Tocizilumab did. I was supposed to take me my 4th injection on 20th of August but have refrained as I don’t want to end up back in hospital again!

So bloody wiped out & depressed st the minute I can’t think straight. 46 year old & this disease as already taken so much from me. My life my job my friends my self esteem & sometimes my marriage! When is all this crap going to end when will I actually get any good news!

I’m looking for a hobby I can maintain because if I don’t I’m going to end up brain dead or even more depressed. I’ve always wanted to learn Spanish so have tried watching a few YouTube lessons but my brain just drifts & I start thinking of other things, my concentration span is zero with all these opioids they’ve put me on. Does anybody have any suggestions or advice? Any ideas would be greatly appreciated

Thanks Donna xx

12 Replies
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Sorry you are having such a rough time donna. It sounds like you are feeling overwhelmed at the moment but it also sounds as though you have great strength and resilience too as indicated by your interest in starting a new hobby. Spanish sounds a great idea and if you could attend a class then there are new people to meet there too. Meeting new people can be such a boost. Hope that helps a little.

Aww Donna, just seen your post now. Feeling it for you just reading this. The frustration is evident in the way you write and no wonder! Your not even getting the chance to think straight. When I feel that way, I have to get out the house and go to a quiet beach or somewhere near water to calm my mind and allow the tension to leave my body. I get anxiety trying to find ways to feel better and getting knocked back all the time. That zaps energy! A nightmare I know! I went to night school around 6/7 years ago to learn Spanish. I really just wanted to speak it rather than learn about nouns, verbs, adjectives etc , was reminding me too much of school 😂. Anyway, a hobby would be good. Swimming is a great way to relax and keeps everything moving. Haven't heard of the drug you are on now. What are they suggesting for you now then? Maybe also speak to your GP about your depressed feeling as there are good meds to help you through this in the meantime.

Sending love and hugs your way!

Suzie X

I inherited a french bulldog and even though this disease is crippling and exhausting she has saved my life. No more sitting around feeling sorry for what I haven't got but enjoying all the joy this beautiful animal gives me and she gets me out even when I'm in pain I simply push through for her sake. So good reasons get an animal to care for.

Hi Cheylann

Thanks for taking the time to respond. I’m a big dog lover, unfortunately I had to have my 16 year old springer spaniel put to sleep 3 weeks ago. She was got really thin & was unable to stand up by herself a bit like me 😁. Knowing how painful arthritis is I couldn’t see her in pain any longer so finally made the decision to let her go. It was one of the hardest decisions I’ve ever made & totally heartbreaking. I do have another dog which I get lots of cuddles from but he’s bigger & more boisterous than Holly so quite hard for me to control🤔. They do bring such joy though I’m glad you’ve got company & comfort with yours xx

I am so sorry for your sad loss! No woder u feel so bad at the moment. I share your pain. It will get better.

Hidden
Hidden

Sorry you feel so wretched. Until such time as you can persuade your brain to concentrate on ie Spanish, could you maybe develop an interest in drawing/painting or photography? It can be picked up and put down at any time, indoors or outdoors etc. If your hands are stiff and sore, hold anything very gently, maybe using a big paintbrush or chubby pencil.You could join a local class when up to it. (No Verbs, adjectives etc to learn, no exams.) Walking, swimming and exercise is great on many levels, but might not be possible at the moment, I don't know. Wishing you well.

donnalouisec
donnalouisec in reply to Hidden

Hi Norisa

I’ve often thought of painting but I’m not very artistic & my drawing skills leave a lot to be desired 😂🤣. In my previous life (post 2011) I was a fitness fanatic, in fact I qualified as a personal trainer in 2009! The frustration of not being able to do what I used is soul destroying but I try do what I can. I’ve previously had spinal surgery due to my RA (C1-C2 fusion) & I’m waiting now for C5-C6 (I think that’s the right way round). I also need a knee replacement & a wrist fusion so am quite limited in terms of exercise.. I may indulge in the painting though you never know I could be the next Picasso! Xx

Hidden
Hidden in reply to donnalouisec

I see how totally frustrating it is to go from being so fit to where you find yourself currently. I don't believe you need to be in any way 'gifted' to do painting. Potentially it can be a very mindful/relaxing activity and very therapeutic if you let yourself paint very freely and are prepared to splat it about. I think we all have a whole host of abilities that we never discover, or easily disregard, as we major on what we like or know we are good at.

I hope you find something meaningful, even if it isn't a natural at the top of your list.

Hey Izzyowl

Thanks for your comments. I’ve thought of joining a class but until my disease is under control I can’t commit, I’m not driving due to being on opioids & with my white cells being low I don’t go out. I’ve learned from previous experience that the slightest infection hospitalised me so I don’t take the risk. Also my younger sister passed away last year from sepsis so I get even more paranoid 😁. I’ve just had another blood test so let’s hope I’m back in the normal range & can continue my treatments xxx

Hi Shalf

Thanks for your response, I so wish I lived near a beach! Before I got poorly we spent a couple of years living in Portugal & one of my favourite things was walking my dog along the beach. Your right the sound of the waves does bring clarity & I always felt refreshed & free if that makes sense. I also suffer with anxiety & depression for which I am receiving treatment from my GP. Over the last 2 years I’ve had a lot to contend with & I just can’t seem to get out of this hole. Thanks again for your suggestions I love swimming & when I’m able I try go even if it’s just the hydrotherapy pool😉xx

Just seen your post. Try Duolingo donna.....it's free & you can go at your own pace.

I had a rudimentary knowledge of both Italian and Spanish and in fact my Spanish is now much better than my Italian just by logging in for 10/20 minutes a day!

Good Luck.

Hi Donna - I am starting this injection next week 😕 just wondered if it is of benefit? From the reviews I can't see much. I am worried about the white blood cells as my last biologic drop them reading so low there was panic. Any advice welcomed 😌

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