Feeling hopeful.: Brook to Freshwater coastal path... - LUPUS UK

LUPUS UK

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Feeling hopeful.

IsleofWight1 profile image
5 Replies

Brook to Freshwater coastal path.

Sunday was a perfect day for walking this route. Wild, windy, bracing, exhilarating.

This footpath is rapidly disappearing into the sea so I was keen to do it again before it is gone. This is what makes me happy.

I’ve had a good few days feeling energetic and awake! (Trying my best not to overdo it) We often choose to travel by bus as the routes and the views from the top deck are spectacular. We ended our walk with coffee and cake at Dimbola Lodge (remind me of this when I’m complaining about putting on weight ☺️). A great day out.

I had a very good appointment with the nurse practitioner at my GP surgery. I asked for blood tests for VitaminsD and B12 and iron. I found out consultants had asked for a raft of tests too so I got the whole lot done together. She also referred me to the sleep clinic and prescribed a new spray for my sinuses.

I’m waiting for my 6 month review appointment with rheumatologist where we will discuss which medication I’m going to try, Methotrexate or Azathioprine. He’s given me leaflets on both but I will leave the decision to him as I can’t figure out which one will be best.

It feels good to be proactive about my health. I’ll do the best I can to live how I want to live with this goddam disease..

Wishing you all well. Thank you again for helping me through my rough patch last week.

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IsleofWight1
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5 Replies
JCZW profile image
JCZW

So glad you are feeling better. I find that fresh air and walking helps me. I love to hear the birds and see the other animals whilst walking.

I was referred to the sleep clinic, it helped me so much. I used to bet myself up about not sleeping but they taught me how to accept it.

I wish you all the best, this condition certainly takes it out of us. X

lupime profile image
lupime

Lots of positives there. Being out walking in nature is so restorative. I am a birdwatcher and it really takes me away from all my worries. Just staring at the sea also does it for me! x

MrsMarigold profile image
MrsMarigold

Hey look at you! Great news getting things coordinated with doctors and medicine.

Your photo is awesome. The sky and sea are amazing colors. Glad you feel better. About your decision about taking M or A: Why not you decide? Ask him his thoughts. Maybe start a new thread or find an old one about each medicine. There is good and bad in everything and you have to know which may have more “good” for you. Hope you keep up the photos!

gmm55 profile image
gmm55

Dear IsleofWight1, I hope this reply will be helpful, although I must tell you that I have been prescribed Azathioprine 50 mg tablets, one a night, for my Crohns/Ulcerated Colitis, not your medical condition. I was very apprehensive at first, as there can be quite serious side effects. However, I am closely monitored by my Gastroenterologist and I can only say that this medication has given me my life back. Prior to taking it, I had to rush to the bathroom seven or eight times at least in one day and didn’t always make it in time. I had to wear incontinence panties for 18 months, until prescribed the Azathioprine, didn’t dare have an early morning appointment unless I got up very early to make sure I was emptied out. Now my Crohns Disease/Ulcerated Colitis is under control and life is pretty much back to normal. Yes, if under stress, I can get an odd flare-up but I can cope with those.

I can’t comment on how they help others who have your condition but I can say, and apologies for repeating myself, they have given me my life back. I truly hope my comments have been of some help to you and want to wish you the very best for the future 😊

IsleofWight1 profile image
IsleofWight1 in reply to gmm55

That is indeed helpful.

Thank you. I’m glad for you that they’ve made such a difference to your life.

Best wishes

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