Back from hospital

[Wumm]

hello everyone,

I hope you are all as well as you can be. I would like some advice please if anyone can help.

My medical history is fibromyalgia, endometriosis stage 4, IBS, depression and anxiety (survivor of trauma and abuse currently in therapy), chronic hep B (asymptomatic)

1. I have been in hospital for 4 days and just got home due to endometriosis flare. They reckon I need surgery for hydrosalpinx, endometrioma and deep endometriosis together with a colorectal surgeon. I was only provided with pain relief meds that I normally take as well as oramorph in hospital. They won’t send me home with any morphine just my normal pain meds of codeine amitryptylime nefopam paracetamol.

2. I also suffer with fibromyalgia muscle stiffness and recently was told my left side was weaker than right although not related to stroke or anything. They think it’s just the fibromyalgia.

3. I am now going to see the pain clinic for chronic pain. I use a crutch and just got my disabled badge. Is there anything I should be asking the pain clinic for please? My main problem is debilitating pain from my conditions. The meds don’t seem to do anything for me now. Also I struggle to get around and have to stick to one floor in the house. I’m in a private rent, can I get support with things like stool, grab rails etc in private rent? If yes who do I contact for this please?

4. I have also applied for a review of my pip so I can get enhanced rate. Citizens advice helped with filling the form but I haven’t heard anything back from them yet. I am currently unemployed and really tight for money, does anyone know how soon they will respond please? And what can I expect from the process of review? I currently get daily living standard rate only.

5. As my family can’t afford for me not to work even with the benefits I currently get. I am wanting to go back to work. I managed to secure a home based cqc job. I am having a welcome call next week and just wondering if there’s anything I should be asking them in terms of reasonable adjustments please? Also has anyone had any experience of access to work with home based working please? What did they offer and how please?

Thank you for your time and I look forward to reading your replies.

[Gigiruth]

Hi WummSorry to hear things are so tough right now.

My reasonable adjustments included an extention of sick trigger in my employment before negative action taken. 9 not 7 days a year. Because it was reasonable to expect I might be off sick more. Also working days spread out mon,wed,Friday. I also had go home at short notice as if fatigue started I needed to drive home safe and go to bed rather than gave to leave my car where I worked because I was too fatigued to drive safely.

Reasonable adjustments can be a wide range of things that will help you personally so think about what helps you.

Having reasonable adjustments helped me by reducing my stress, Having an employer who understands is massive. Because I had reasonable adjustments my manager knew to send me home when covid happened.

Same for Access to work.

Home or other working. What do you need?

They will do an individual assessment.

Take care

Gigi

[Wumm in reply to Gigiruth]

thank you Gigi for the detailed response. I have a welcome call with Hr next week so will ask them for Occ health assessment and mention some of this things. I guess with my role being fully remote mine might be regular breaks, ergonomic supplies and maybe flexible start/finish times. I am just glad to have secured a fully remote role as it’s a matter of need for us that I work as opposed to want. xx

[Africanmonkey]

I have grab rails around the house and I am private renting also, plus a rail to get upstairs. I have a chair to sit on in the bath now but I am also waiting for my pip to be re assesed

[Wumm in reply to Africanmonkey]

Thank you Africanmonkey,

Can I just ask did you had to ask for permission from the landlord?

How did you manage to get the home equipments? Did your GP refer you or can one self refer to occupational therapist? I’m presuming that’s the department that deals with things like this?

Goodluck with pip, I hope we get what we need.

Thank you so much xx

[Africanmonkey in reply to Wumm]

Re the grab bars, my GP arranged for the grab bars for me and alot of other things that I might have to use later. My landlord was happy for me to get them put in aslong as when I left they were removed and the holes filled in

[Wumm in reply to Africanmonkey]

Right okay. Thank you, I will get in touch with them tomorrow and get the ball rolling xx

[Yassytina FMA UK Volunteer]

Hope you get some helpful advice, sorry too read your going threw so much xx

[Wumm in reply to Yassytina]

Thank you Yassytina xx

[army1]

Hi WummWhen I went to the pain clinic I told the Doctor that I need something for break through pain, I have all standard pain relief but it does not always work. They gave me oramoph at the dose of 2.5- 5ml and it works best of luck to you . Take care

[Wumm in reply to army1]

Thank you army1, I will let them know when I go.i hope I get lucky xx