Hi everyone, it’s been a long time since I’ve been on here. When I was first diagnosed PPMS 2007 I was always looking at this Forum because everyone was helpful and offered advice, and I learnt a lot of useful great information. Now, I’ve been married for 28 years most of them happy, with the usual ups and downs. But I’m so unhappy now, I don’t recognise my husband any more. I desperately want to leave and find somewhere to live away from him. He doesn’t knock me around or go with other women or anything like that, but he has pushed me away physically and emotionally, I feel isolated and neglected. He has type 1 diabetes (had it for 30 yrs or so) but doesn’t really look after himself very well. For example, he won’t or can’t be bothered to cook, so it is all left to me to do and you have to eat properly when you have to take insulin, There are times when I’m so fatigued, I’m fit for nothing and unable to put a meal together, so he will make himself a bowl of weetabix! what about me?? He never complains to me or criticises me to others, but just has no idea how I’m feeling. Never talks to me ‘properly’ buries his head in the sand about everything. I wash and iron his clothes, try to keep the house tidy as best I can. He never says anything ‘nice’ to me to make me feel good and he can be depressing to be with that it is dragging me down. I really need some kind of counselling to help sort myself out. I am living in a detatched house with stairs and a totally unsuitable bathroom with a bath I struggle to get in and out of. I’ve been waiting over 5 years for it to be adapted to my needs, but told that because he works and earns over the limit (I am now medically retired with a small pension) we are not eligible for a grant (DFG) and so we go round in circles and nothing gets done.
I feel that because I am no longer able to ‘mummy’ him like I always did (totally my fault for allowing it to happen) he’s lost interest, and frightened of the future because he will have to look himself and ME. He is totally not a caring type, and I just need advice as to how I can get into sheltered housing of some sort. I don’t have a clue where to start, or what may be a possible course of action for me. PPMS is only going to get slowly worse, and it has, my walking and balance is now is very limited, and I’m scared for the future, and can look after myself but two of us is very hard.
A sharp wake up call is needed here. but I don’t know what to do. Idle threats will be no good, I need professional guidance with realistic options. Thanks for listening !