This is a combination post. First up it’s my first post of October and therefore my first Blogtober post of 2022 where the objective is to post every day throughout October. Also, the lovely Sheryl from A Chronic Voice is back with her writing prompts for living with a Chronic Illness. The first prompt of Blogtober 22 is 10 Things You Don’t Know About Me. Well, there isn’t much I haven’t shared here so unless you are new then I’ll just be repeating myself. So I’m going to write 5 Things about my Chronic Illness using the prompts inspired by Sheryl.
Ok, for those that don’t know me, or even those that do that may have forgotten. I have a rare auto-immune condition which affects me neurologically. It’s called Stiff Person Syndrome and it does what it says on the tin, it makes me stiff, amongst a million and one other things. It also prevents me from walking properly because I have a spastic gait and my brain has fallen out with my feet. So I use a wheelchair. I have six weekly infusion treatments of immunoglobulins (IVIG) and take a plethora of pills. I won’t get better, but I still try to live life as much as I can. I was fine until I reached 50, then two months later my body developed these stupid little anti bodies which attacked my nervous system and I became disabled overnight.
My teenage daughter is also disabled. We are still working on a full diagnosis but she has some form of Inflammatory Bowel Disease (IBD) not to be confused with IBS which is awful but not the same. She also has Elhers Danlos Syndrome which is a connective tissue disorder. It has already affected her cervical spine and she’s had major surgery. When she was eight years old she had her head screwed on, quite literally. The doctors seem to think that the EDS is to blame for her current problems. Basically, in the last few months, her bowel, bladder and kidneys have given up working properly and she has been hospitalised twice and now has a catheter for at least another few weeks. (that will be around 3 months altogether.)
I have experienced the entire disabled/enabled experience quite fully in the last few months. despite being disabled and in a wheelchair, I’m my daughter’s main carer (She’s also autistic.) I used to share the job with her Dad but now that she’s a teenager she doesn’t want her Dad’s help anymore as a lot of her problems are personal ones. This means that despite my disabilities I’ve had to step up and provide that extra care for my daughter. I have spent two nights in A&E (ER) with her while in my wheelchair. When she was admitted to a ward I was given a bed, but I still spent an awful lot of time in my wheelchair.
I have had to look after my girl day and night to the point of exhaustion. I did have a couple of breaks but she wasn’t happy with nurses taking over. Thankfully, she’s in remission at the moment so I’m recharging my batteries. I may be disabled but I will do anything to enable my girl.
I sometimes feel that my life is made of commitments. I am committed to providing the best possible care for all my family no matter what their needs (Which are many and varied.)
I am also committed to sharing my story, this has been a sore point in the past and I’ve lost friends and family because they believe I shouldn’t talk about how hard life can be sometimes. Well, I don’t care, life isn’t all love and joy, but trust me, if I do have something lovely to share I’ll do that too, and we try hard to have lovely moments in our life.
I believe in education and have always committed myself to life long learning, there is always something new to learn. My children have all had different experiences when it comes to education and it’s not been an easy ride for any of them. I do believe in education but I don’t think that conventional education is for everyone. Commitment to learning can be in many forms.
This is another tricky thing when it comes to Chronic Illness. Just thinking about my daughter’s journey the communication has been quite harrowing. It took me three visits to A&E to get them to scan my daughter’s neck when she was young, each time I’d been asked if she’d had an accident and I’d said no and she was sent home. Then I lied (Well kind of because she had fallen but only grazed her knee) I told them she’d fallen and it could have hurt her neck. She was scanned and admitted straight away when they saw the damage.
I’ve found that over the years and many, many visits to A&E that they work on a tick box method. If your blood pressure, temperature, heart beat and general blood tests are ok, then they send you home to speak to your GP. If your problems are specific i.e. bowels or gynaecological, then they will tell you to go to GP and ask for a referral. If you have a broken bone, or your SATS (see tests above) are not right then you will be admitted until a doctor can see you. (These are just examples, but basically, unless you are seriously ill then you will be sent home to see your GP, even if your GP sent you there in the first place!)
The staff also seem to work to a script. While in a cubicle I was near the nurses office and they had a constant stream of people come and ask them how much longer they had to wait (probably after being there for at least four hours already) and the nurses would always say ‘let me see what I can find out…tap, tap, tap on a screen, or scan a document…. oh, it looks like you are next on the list, it won’t be long. This happened over and over and over. I even had a go myself with the same result. I’m not putting them down, they are in a difficult position, they don’t know when a doctor will be available and they just want to put the patient, or carer, at ease and let them know it won’t be long.
The last time I was there with my daughter I went to the nurses office and said I was really worried about my daughter. I was told that someone would come with pain relief to the waiting room. When they arrived they took one look at her and she was taken off to a cubicle and bed almost immediately. So, they do their best when they can.
Communication is important. It may be a script that they are working from, but when things are really wrong the help will come, and hopefully it won’t be too late.
Just one more point on communication. I find that when I have a consultant appointment I forget everything I want to say, so I always go armed with notes so I don’t forget. I once even drew a picture of how I was feeling and where the pain was affecting me. The doctor found it very useful and went through every point with me, which in turn helped my understanding of what was happening to me.
This is something else I’ve been thinking about. Not so much reinventing, but the future. However, my future will need to look very different so I need to start planning and reinventing my whole life. I need to work on my family dynamics and how we can work together in the future.
All plans get disrupted sometimes and we need to stop and work out what we can do to make things start moving again. My daughter left school and went to college but it didn’t work out. So we applied to a new college but she got sicker. Now we are reinventing the idea that college has to follow straight after school and taking time out until she’s ready. I’m sure that one day she will be, we just need time and help.
My Little Man has also had his education path interrupted. Again we’ve had to think out of the box, especially seeing as there are no school places available in our area. So, we are home educating for now, but there are other options to conventional educational settings.
Life hasn’t been kind to us, but we can’t let it get us down. We need to pick ourselves up and keep on reinventing our paths until we find the right way to go forward, or sideways, or even backwards, it doesn’t matter as long as we keep going somewhere.
One of the Chronic Illness prompts was commitment and I have always committed myself to completing Blogtober, it’s always a great time for bloggers to re-connect or make new blogging friends as well as bringing blogging back to life.
Of course, as we move with the times, we can also post our Blogtober entries on Social Media too and I may even do this at some point. I do try to stick to the prompts but I love that they are open to your own interpretation. Tomorrow’s prompt is best books to read in October and I run a book linky which opens up on the 1st of every month, so I’ll be moving over to my other blog At Home A Lot