Oh dear.
I’m back in hospital. It’s OK, I’ve got this but it’s not ideal.
I’m gonna break down why I’m here and how I’m feeling…ramble incoming. But there’s some wisdom in there somewhere.
Pic: Manifesting my trip to NY in Feb. I will be well!
WHAT HAPPENED
I’m here because my maintenance drugs (streroid low dose) have stopped working. I have been waiting to get approved for a new drug which was due to start on Thursday. Approx 2 weeks ago I noticed symptoms returning and was in touch with the IBD nurses here. It’s called a ‘flare line’ and you call if you notice things or need help. Amazing service but…as I continued to document my decline to them…nothing was done and frankly I’m here because a lot of f**k ups.
I should have had the drug I’ve been waiting for in Feb/March this year when my flare wouldn’t go after 4 months but because of funding, the approach is to try a host of other options before the spenny ones…that’s months and months of pain and life gone, plus unknown damage and spread of my disease because the NHS are tight
When I came out of hospital in early Sept my care dropped off a cliff. I left with a hefty prescription, a new complex drug to take and just the number for the IBD nurse line. My GP has been unbearable in trying to get an appointment with. All my prescriptions have been incorrect and impossible to get and my consultant / IBD nurses have quite simply not moved quick enough on the new drug, nor taken my decline as seriously as it should have been. Complete failure, I should not be in hospital
But anyway, here we are. I’ve moved out of anger now and I’m in full acceptance. Right now I can’t change the past but I have learnt what I need to push for and how…and to trust my gut even more. Only I know how I feel and what I need and when people aren’t listening I need to get heard. Easily said but when you feel like s**t and a nuisance that’s quite hard to do.
THE NOW
Back on my ward. In my little room. I know the drill and that is in one way rather sad but in another comforting and helpful.
So many people seem shocked I can put up with this…I have no choice. This is my only path to health for now. You’d do it too…perhaps it’s not as bad as it looks from the outside.
I cope through:
- Believing I can cope
- I believe (at the best of times, not always) this is for the greater good and I whole heartedly believe I will get fully better soon
- Acceptance, of where I am and what’s happening
- Connecting. Making friends with all staff and chatting, learning and sharing stories. They’re all so lovely and I’m happy to see friendly faces again
- I take control of what I can….I have a little routine, I keep up my rituals and use my time to rest, receive help and do things I enjoy
- But at the same time surrender, this is happening and this is the time to let myself heal, go all in
- I’m grateful. It may sound weird or a bit twatty but I am grateful for this experience. I’m learning and I’m being held and loved….I’m lucky to have the health I do, the knowledge I do, the NHS, the people that support and love me and so much more
But it’s not always great. I start everyday releasing my emotions and crying a lot…it’s hard and I wish I wasn’t here. I have grief for what I could be doing, where I could be. The worst thing is missing my Ziggy, who doesn’t like hospital. I have a deep fear of not getting better…ever. But feeling and releasing those feelings is key to healing and moving on with my day.
IF YOU KNOW SOMEONE IN HOSPITAL
Some great gifting ideas (this is not me fishing for gifts ;):
- Something for your body – a nice moisturiser or similar, really makes you feel nice and connect with your body at this tough part in the relationship…
- Something to eat – check what they fancy or can eat right now
- Something to read – is there a book they’ve been meaning to read, now’s the time
- Something for comfort – a towelled robe is great for the crappy hospital shower, a hot water bottle for comfort
- Something to look at - a card, a picture, something that makes them feel your love when you leave
And if they don’t have one, an eye mask to sleep in is EVERYTHING.
My bank balance took a hit last time and I’m very grateful to have most of these things. They all make me happy and bring a spark of joy multiple times a day.
So while you may pity or feel sorry for me. Please channel healing and love and send that my way instead. Thank you for your thoughts. I won’t be here long this time and I will leave and not come back!!!
L x