I’m (sheepishly) back
Hello you lovely lot.
Firstly thank you all so much for all the wonderful messages I received after my last post (Going Dark), it means so much to know that there are so many people thinking of me. I felt a little embarrassed after hitting send, I worried that I came across mardy and miserable. But I felt mardy and miserable at the time, so it did the job!
I’m not really feeling much better, I am thoroughly exhausted and still having the aching joints, dry eyes and skin. The blood tests results didn’t show any remarkable inflammation markers and the Rheumatoid Arthritis test came back negative which is great news as I was really unhappy at the thought of more steroids and a RA diagnosis might have pushed me too far! I’m having some more tests to check my iron stores, Vit B 12 and Vit D levels as well as thyroid tests and coeliac disease tests.
Someone suggested that perhaps the exhaustion was just part and parcel of life now and the joint pain could be due to all the steroids I’ve had to take in my life. I know fatigue can play a huge role in the life of IBD patients and this makes me sad.
Emotionally, I suppose I’m not quite right. I feel ever so sad and quite anxious. I don’t know how to react to these feelings, people ask me how I’m doing and my instinct is to say ‘fine’. I smile, I laugh, I join in. But inside I am struggling. I don’t really know what else I can say. I’m trying to get back to business as usual.
Anyway, I just wanted to update you all and thank you for your kindness over the past week.
Sam xxx
Sam I have j pouch. I was diagnosed with fibromyalgia and hashimotos. Sounds like you have similar symptoms. These are autoimmune disorders that are linked.
Thanks, I’ll mention it to my GP x
I’ve had a majorly difficult time health wise lately too, and I’ve been on that emotional rollercoaster. I’ll be ok, say I’m ok, then suddenly a wave of depression hits me. I do know one thing that always makes me feel good though, and that’s writing. I sit down, and write a chapter, and as I write I forget the pain and when I finish I’m incredibly calm and happy. I know you write too (looking forward to book) so maybe that can work for you too?
Sorry to hear you are having a tough time. I am really using writing (as I always do!) to help me through this. I sometimes struggle to voice my struggles but I can write them down. That helps me and it means so much to know it helps others too x
yeah, sounds like fibromyalgia to me too. Chin up hun, you have many supporters!
Thank you. My GP is totally on it, I feel believed and like they are on my side in helping figure this out. That is half the battle!!
Sam
If you have fatigue, there’s no shame in that. It takes a lot of effort to shine when you feel down. Take time out to build up your reserves and come back fitter to give ’em a kick up the ass.
Chris
Thanks Chris x
Thinking of you. ❤️
Get well soon xxx
Thinking of you, Sam. Have an ice cream and sprinkle some more glitter somewhere xx
Reading your post was as if I was reading about myself, I had vit d and iron results back and I’m very low on both. Keep your chin up lovely, you are an inspiration. I see you are popping up everywhere, my continence suppliers added that they have teamed up with you. You may feel like crap, but you are a ray of sunshine to your followers. Love & hugs xxx
Thank you. This is the reason I keep writing and keep sharing because even when I feel isolated and alone in this, I know there are so many other people going through the same thing. xxx
I just came here to wish you the best and hope you ask for as much support as possible with regards to your anxiety & sadness; people will be there for you. Also, you look beautiful in that picture – your smile is radiant and it’s just a really authentic seeming selfie. (I hope that makes a remnant of sense). Glad the results came back negative too – keep on keeping on! x
Thank you xxxx
Hi Sam, dont apologise or feel guilty for feeling rotten physically and emotionally. Its not surprising given the constant barage of health issues youve been through. Just remember that everyone thinks you are so brave, but that doesn’t mean you have to be “up” all the time. Sharing your dark days with us makes you all the more human and inspirational (hope that makes some sense). I know a lot about anxiety, and you have every right to be anxious when you never know what your IBD has in store for you each day. Unfortunately in this country the doctors only treat one condition at a time and are really bad at looking at ones overall well being. There is still a culture of “just get on with it” especially in the medical profession. My doctor told me I “really should be, dealing with things without drugs”……… Would love to know if they would say the same about a broken leg for example…..
You saying “inside I am struggling” speaks volumes to me, So if you genuinely feel your mental health is suffering, make a separate appointment and tell the doctor, dont tack it in to the end of another appt and so “oh and by the way I don’t feel so great” as they wont take it seriously. Use that BadAssNess to get the help you need for your mental well being as well as your physical well being. X
Thank you so much for your comments. At the last GP appointment she asked how I was feeling emotionally. I said ‘fine’ straight away, but then realised I shouldn’t lie and admitted I was feeling quite low and anxious. x