Last night a wave of depression came over me, I felt very tearful, isolated, Afraid & Alone … I felt very fearful of what lies ahead….It was not like me because I am for the most part, up beat and positive. I try to help inspire others as and when I can, but last night something just happened… like a tap being turned on. I think because I’m so positive it was more of a shock, these bad down times do happen and it shouldn’t be that much of a surprise really but all I wanted was a hug or to speak to someone apart from my husband, I have to be the strong one in the family so couldn’t tell him the way I was feeling. I have this way of saying when asked “how are you” I say I’m fine thank you, how are you. I never let down the shutters, I suppose it’s because I am frightened that once there open I won’t be able to shut them again.
The reason I’m afraid is because I seem to be going down hill and I can’t stop it … my MS is changing and I have developed different symptoms on top of what I already have. My left side has been bad since the start but my right side seems to be joining the left, my right foot is becoming numb, as is the rest of my leg…
I feel like a bug ” STUCK IN A WEB” … THE MS WEB!… just waiting for it to take control and engulfs my whole body.
I have bruises and scratch all over both feet, as my feet are always freezing I find myself rubbing my feet together trying to warm them and by doing so I scratch my feet with my nails(which need cutting)the bruises are also from my rollator, when I use it to get to my stair lift, I kick the wheels as most of the time I don’t wear shoes indoors so I end up with more bruises, then without realising it when reaching for anything with my right hand 9 out of 10 times I drop or knock it over, I went to pick up the phone last night with my right hand and the hand set ended up across the room. Laughing at how I drop and knock things is now getting me down.
I need personal contact: I just need a friend someone to talk face to face with, someone in the same room as me drinking coffee and talking, I don’t have that haven’t since my dear friend Tracey died of breast cancer a few years ago. Up to October 2013 when I was still working though nobody I worked with I would call an actual friend, I did at least have contact with people, I was also going somewhere every day, admittedly it was work but I did have a reason to dress up and put my face on.
These days the only time I go out of the house is to Hospital, Doctors or Psychology appointments, apart from that I don’t leave the house, the only fresh air I get is if I ask my husband to open the window.
Since leaving work “retiring due to ill-health” and in the same year as being diagnosed I have been alone (apart from my husband) which even though I love him and he does everything for me it’s not the same as having a friend a pal, someone you can rely on, you can call, someone you can laugh with, cry with, moan with, go out with, just to have a pal (girls you will understand) but unfortunately I don’t have that person, I sit in the same chair in the same room day after day, I do try to keep up my appearance wearing matching accessories, putting makeup on and doing my hair. But sometimes when I say to my husband “can I change that top as it doesn’t match what I’m wearing”, he says “why worry it’s not like your going anywhere”…I think that says it all doesn’t it? I can’t move around the house easily as none of the doors are wide enough to allow my wheelchair to get through, and all other sitting around the house is too low for me to get out of and with being able to walk only a short distance with my rotator once I’m down stairs in my “rise & recline chair” that’s it till 10pm when I go back up again.
Having trouble coping : My husband is having real problems coming to terms with it all, everyone says how wonderful he is looking after me, don’t get me wrong I don’t know what I would do without him, but he is having problems, he hates cooking, cleaning and if he was honest having to look after a wife that has been his rock and soul mate for 27 years, and always looked after him, he won’t talk to me about it, in the 27 years we’ve been married we have always been able to talk about anything and everything but now that has gone. When I ask him to talk to me he says “Leave it” I’m concerned about his health and he isn’t getting any younger, he’s had a bad cough for months, I just want him to get checked out and have ask him to please go to the doctors, but he tells me to leave him alone and stop moaning. Also im worried silly our mortgage which runs out in two years and we are only paying the Interest, so we will have to sell up to pay back the whole amount, when I ask what are we going to do he says leave it , he will not talk to me.
Day to day : After breakfast which we eat together in the front room watching the news at 8am he then goes into the conservatory to smoke and continues to watch tv in there, after which he goes into his study and I don’t see him again till lunchtime at 1 when he gets lunch and we repeat the morning over again, back into conservatory then into the study till 5pm, he spends his day on the phone talking to friends or on his computer, he misses work and likes to feel as though he’s still doing a 9-5 day which he does in his study now, but all that time I’m alone in the front room sitting on my bum listening to the radio.
Weekends: We repeat the mornings as we do Monday to Friday, my husband then writes a shopping list and goes out at 11am does the shopping then stops at the pub on the way back, (unless he’s playing golf then he’s gone all day,he lays out my lunch in the kitchen which I fetch at 1 pm, he arrives back at 3pm with the shopping and tells me who he’s seen and what they have said and tells me any gossip. After he has un packed the shopping he takes his late lunch into the conservatory to eat smoke and watch anything he can find of interest on the tv, he falls asleep shortly after he’s eaten he’s lunch, so there he stays till tea time at about 6.30pm, and I once again have just been sitting on my bum alone listing to the radio.
Sorry to sound ungrateful… I don’t mean too but I just needed to put down how I’m really feel. Most people see only one side of me, the happy smiling everything is fine side of me, but people don’t see the other side the lonely, unhappy, sorrowful, isolated, person behind closed doors (where I spend most of my time).
That is why I write my blog which has been my saviour . Apart from telling you how things are with me I suppose what I really want you to realise is that the bad days and the feeling lonely days do happen to everyone… So please don’t feel you need to go through them on your own… reach out to someone, anyone that you can talk to, anyone that will listen…it helps just to talk and share your feelings.