Hi All,
Having witnessed the distress my lovely sister is going through I want to help but don't know how. I see her exhaustion and lack of progress with medication. She is an insulin dependant diabetic and the meds seem to have really messed up her sugar levels. Consequently her fatigue has increased dramatically. Has anyone else this experience?
Hi Obeeonekenobe,
I was diagnosed with DM in March 2016 - I was 45yrs old. I’m not diabetic so cannot give any insight to that area but will tell you my experience and what helped me.
It’s such a hugely difficult time after diagnosis and for me I was at my absolute worst. It was all made so much easier for me to deal with having incredible family support for the first three months. I was so extremely lucky. They were such a team and all helped in different ways. My husband was incredible and my emotional rock, my champion and advocate at all hospital appointments. He would be able to describe how I really was - I had such brain fog and fatigue that I would forget details. He also pushed for things in a very concise way that eventually I was given IVIG which helped me so much.
My mum helped with all my laundry and bed making and some cleaning. It was a bit hard as she was very distressed to see me so very poorly and she was trying to hide her emotions. I had swallowing problems and my voice had changed so it sounded weird. After a while we started to clash sometimes when I was asking her to do things a certain way that I like them done - she didn’t like my tone of voice - the way I was asking / telling her do do stuff - this was upsetting for me as I wasn’t able to ask in different tone being so incredibly fatigued and with this nasal voice.
My in-laws came and batch cooked fantastic healthy home cooked meals especially soups which I could swallow easily. Even having some fresh veg chopped and ready to use in the fridge was such a huge help. I struggled to do even simple tasks in the kitchen and would fatigue quickly. I had to have help using the oven and lifting the kettle - reaching for things as well.
Friends looked after my 4 year old boy after nursery - either taking him for a play date or bringing him home - I wasn’t strong enough to get to the school to collect him.
And my father in law was there ready to take me to the various scans and other investigations that had to be done. I was far too weak to drive.
They were amazing. But there was a limit for them. And burn out came after about three months. And I realise that between them I was having almost full time care.
The second best thing I had was support from my County Council Adult Care Social work team. I had an assessment of need and was awarded a direct payment which enabled me to employ a couple of personal assistants, who between them helped me with all the above daily tasks my family had been doing. I have been very lucky and things may have changed in three and a half years - I dread to think what would have happened if it didn’t work out like that. The council identified that my husband needed to work and that I needed support with my child.
There is so much more to helping someone and it can be completely overwhelming.
Think about your strengths and where you can be most effective for your sister. What time you can realistically give without overdoing it.
We employed a cleaner for two hour a week which helped until I found the PA’s.
And contact your local social care team as soon as possible to find out if there is any help available to her - I don’t mean benefits here although that is an area that she may need help with too (PIP and ESA) - I mean help with her daily care. They can arrange to come and do an assessment of need.
It’s too much for one family member to take it all on especially if they work.
I hope this helps you a little.
I’m doing so very much better now. Almost back to normal (the new normal!). I was medically retired and I can manage really well now. I’m on the right medication for me and have come off the steroids after 3 and a bit years. I have 6 weekly IVIG infusions and although I still fatigue from and need some help from time to time, I’m happy and loving life.
I do hope your sister gets the medical help she needs and starts to improve.
All the best for you too - good luck.
Fiona
Thank you Fiona some of your comments are so pertinent. Our elderly mother gets very distressed about my sister, it breaks my heart. I will certainly look at involving our local social care team. Never heard of IVIG infusions so we'll do some research on that. My sister has lost so much weight she is looking like a different person. I love to cook so I will start looking at some nutritious soup recipes. Thank you so much for responding.
Sorry to hear about your sister.
Fatigue is a common issue with Myositis and you can feel permanently exhausted, being insulin dependent must complicate matters further. I had a relapse in 2013 after 13 years off treatment and literally was asleep most of that year, as was so tired. I would just about manage to get the children to school and then fall asleep while eating breakfast and would be asleep at the table all day until an alarm or telephone call would wake me.
Usually Prednisolone is the first line of treatment and help to stabilise the disease , but imagine because of your sisters diabetes this is a treatment that may have been avoided.
Many of the oral treatment options take between 3-6 months to become fully effective so this could be the reason for lack of progress. There are some other treatment options that could be considered such as Rituximab or IVIG, but usually the protocol is to have tried at least two other treatment options first, but because of your sisters situation the doctor might be able to make a case to have it sooner.
If your sister is not already seeing a Myositis specialist there is a list on the pinned post (left hand side) and a second opinion could be considered and requested via the GP.
Thank you for your response. My sister's consultant and GP seem very good but I will consult the list. We are hoping that she can get some sort of normal life back if the right treatment is found.Many thanks. Hoping for remission for all sufferers of myositis.
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