Thursday 3 August 2023

Living alone with M.E. & other chronic illnesses

For part one on my home story which covers the struggles I went through and the many let downs I had before my new home finally was mine check out my blog post ‘Welcome to my new home!’

If you’re new to reading my blog I have several chronic illnesses: M.E. - a neuroimmue illness, Ehlers-Danlos Syndrome - a genetic connective tissue disorder, FND - a neurological disorder, amongst other illnesses and other health complications. 

My health especially having severe M.E. does make life living independently a HUGE challenge but I’m finding ways to make living on my own work. (I wouldn’t still be here if it wasn’t for my care team).

I thoroughly love living on my own despite all the challenges I’ve had; not just with my health but I’ve had a lot of support from lots of different people. The charity Framework have been amazing offering all sorts of housing related support and beyond. My Dad and stepmum for getting the bungalow ready to move into and. My Dad’s continued DIY skills and grass cutting. My Occasional Therapist (OT) for arranging the adaptations and providing equipment. Then come my PAs and carers, I honestly wouldn’t be living here without their support and enablement to have the life I have. 

One of the main challenges is that thankfully I got the increase in my care package that I needed. - With my M.E. everything has to be paced so things take longer so I needed more hours than would normally be given.*

One big problem I’m having is that for a long time now I’ve been struggling to employ an additional PA and I thought that the additional hours the job was offering would be more encouraging however I’m still without an extra PA (or two). In place of that I’ve had to rely more heavily upon my care agency to cover my evening care and the 3 day weekend I don’t have a PA for. It’s not ideal but thankfully it’s a good agency and they try to give me the same few carers were possible. However the time I have with the agency isn’t the full amount of time I’d have with a PA (for example in an evening I currently only get 1/2 hour of care but with a PA I’d get 1 ½ hours) so I can be difficult some days especially on my bad days when things need to go at a slower pace, I have a seizure or I’m needing more support with additional tasks. 

Tips for living alone

  • Plan ahead, if you think you may need care or your care package increasing contact your local adult social care services and ask for an assessment way before you move in. This gives you extra time for an assessment to be done and for care to be organised.
  • Also ask adult social care to refer you to the OT Housing Team for an assessment so that when you do move an OT can assess you for what you need from a home and provide a housing letter detailing what your housing needs are. Then once you’re in your new home they can arrange and provide you with the aids and adaptations you need. They can provide you with advice on any other aids or equipment you may benefit from buy purchasing yourself such as kitchen aids for cooking. They will also work with your housing provider or landlord if needed. The OT can also arrange for any hospital equipment you have at your previous address to be moved to your new address.
  • When you start looking for a property consider asking for support from a housing charity who can can provide housing related support, such as helping you view properties, understand signing tenancies, organising your utilities, supporting you with any problems etc. The list really is endless with what they can do and from my personal experience their support is a lifeline.
  • When getting ready to move have a really good clear out. See it as a fresh start. I got rid of so much stuff!! Some just got thrown, I donated a lot to charity and a lot of my craft things I donated to the hospice for patients to use. I really did downsize!
  • The minute you think of moving out save save save!!! Moving into your own home is expensive from needing cutlery to furniture but just start with the essentials first. Thankfully I was fortunate that I already owned a lot of my own furniture. Charity shops are also great for second hand furniture and even white goods to get you started.
  • Take your time buying things. Online shopping is a good way to save energy especially if going to the shops isn’t possible for you. Also I planned the look of my new home on Pinterest; this was very fun but it also gave me ideas for my new home like the IKEA furniture combo that’s now my craft desk.
  • Pace out the moving process and gather all the help you can. If you don’t have many people you can call upon you can if affordable consider getting a handyman (or woman) - there are some out there that are DBS checked for added reassurance. You can either pace out the packing and then move in or this is what I did:
    • I paced out and got support organising and going through and packing my belongings. When packing boxes I labelled with the contents and the location of where they’re going within my new property.
    • I slowly moved my belongings into my new property once it was carpeted and repainted.
    • I got a removal company to move my furniture and the remainder of my boxes.
    • Once my furniture was in I got help to start unpacking even before I officially moved in
    • On the day of moving in was the day my bedroom blinds was fitted and my hospital equipment was moved for me.
      • Moving this way really helped by doing it in little stages. I was desperate to move in as soon as I could but pacing it out even though it still caused a major crash but it was very beneficial and I’m grateful for all the help and support I had.

Things will be difficult initially, nearly three months in I’m still trying to figure things out and it’s definitely not been plain sailing. However for the ten years I’ve been chronically ill now this is the first time I’ve actually had something to celebrate and this is is something BIG to celebrate! I often look around my little bungalow in amazement that I’m still here. I’m happier and for my health my little bungalow is much much better for me. No more stairs or long distances and I have the grab rails I need and odd aids like my perching chair. I’m just a couple of meters from my bed to the bathroom which helps. Then the front room has an integrated kitchen area which at first I wasn’t sure about but it’s worked out amazingly as there’s less walking I’m just a short distance from my bed to the kitchen and when I can I try to sit in the front room or at my craft corner on my good days for a short while so I’m not in bed all day. I also feel I can be more myself like when I’m not feeling well I don’t have to hide it and I can do what I want when I want (within reason of course!) 

I’m still yet to re-find a daily plan that works so I keep overdoing it and forgetting to time activities so I go over my activity limit and get payback with vengeance. I think my body is still trying to get over the big M.E. crash from moving and it’s just taking time for my body to resettle. This is hard as I can’t just stop to recover as there’s things to do. I’ve done some things to manage my M.E. and other illnesses better such as I now have a cleaner and I try and give my PAs and carers more house tasks giving me time to rest as well as pacing down when I’m on my own. I’m sure in time I’ll find my way and what works it’s just a case of trial and error as well as allowing my M.E. to settle down.