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Stroke Survivor - female
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About whotheheckamInow

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    Associate Member
  • Birthday 06/16/1970

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  • Stroke Anniversary (first stroke)
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  1. Hi Darin, Nice to e-meet you. I'm Sandra and I had my stroke last December at the age of 46 (turned 47 in June). I'm tired all the time too, concentration and short term memory are impaired and speech isn't great when I am tired. I'm glad you found this group. I'm a newbie here myself and have found everyone here so helpful.
  2. Hi all, Deigh, I found that we have a local stroke group so I have joined them. The first meeting after the summer break is 22 August so I will go there. I also found out they have a midlife stroke group so I will find out more about what activities they have and attend some of them. No one at the hospital told me there was such a group or that I could have home help so I'm finding new things out every week. We have a local centre where you can go during the day just to chat to others but right now I don't feel like it's what I need or want to do. Maybe when my husband goes back to work on 4 September I will look into attending some of these types of things just to get out of the house. I totally understand getting upset when things go wrong as I find myself doing that quite often. Like today, one of the members of the assistance team phoned me and started rattling things down the phone. I can't keep up, I don't like phone calls because I find them confusing. I told her several times she needed to slow down so I could comprehend what she was saying. Unfortunately, she didn't listen and I just ended up fed up and frustrated. Partly because they were instructed to phone my husband if they wanted to get in touch with me and partly because she just rambled and rambled without coming up for air and wouldn't listen. It's great that they are offering me help with everyday things as my husband won't be around much during the weeks when he starts his new job, but the help I get has to be given or scheduled in a way that I can handle and comprehend. My husband took the phone and spoke with the woman and they are coming on Monday to discuss what they can offer me and what I need from them. Having strangers come here doesn't make me feel good and makes me anxious but I need the help so I have to suck it up and get on with it. On a positive note and in relation to getting out and doing things I wouldn't have done before - I've started doing Pilates and I love it. The instructors are so helpful and work with me as they know I have concentration and memory issues but I have now gone from 25 minutes to 45 minutes twice a week. I'm doing more advanced stuff now and I feel like it's a positive thing. It's getting me out of the house a couple days a week and I have met a couple people through it that I will go out for coffee with in the near future. Lin - I am a bit angry about the cognitive problems and not being able to do my former job. Most of my clients know I am on long-term sick leave but I still get the occasional e-mail with requests and I just explain that I'm on sick leave. Nothing else to do about it. My strategy for the time being is to focus on becoming more independent and time will tell what I will be able to do in the future. I worried about it at first (all the time) but I am now just focusing on getting through each day, one day at a time. If I can return to work sometime in the future that would be great, but if I can't I would like to reach the point where I could volunteer a few hours a week doing something productive. In December I will have been on sick leave for a year and after that my sickness benefits will decrease some so that's a bit of a worry. Navigating the system of sickness benefits/early pension/long-term sick leave and all the different classifications isn't easy. Even my husband can't figure it all out so he will phone my case worker next week and find out how the system works. I wish that the hospital would have informed us about all the different programmes out there and the help that is available when I was discharged. I was on the stroke ward for a week but nothing was discussed. No aftercare, no home help, no way forward. Just discharged me and didn't tell me what to expect, how I would feel or how I would expect to feel. I had no idea that depression, anxiety and all the other things I am feeling are common until I met all of you in this group so thanks a lot for being open about things. It's appreciated.
  3. My personality has changed. I used to be an extrovert and now I am a total introvert. I have major anxiety and social phobia (it was there before the stroke but has increased tenfold since the stroke). I am much more insecure and doubt myself and my abilities all the time. I am nervous and sometimes have a short fuse. I used to be a very chilled out person before the stroke. I cry easier now than before the stroke and am much more emotional. This is how it is for me right now, but it can change or it can stay the same. Time will tell. One thing I do know is that having the stroke has made me find out who my true friends are, who is supportive and who is not. I can't do some things I did before, but I am doing other things now that I never would have done had I not had the stroke and meeting different types of people that would not have been in my normal social circle before the stroke so I think it's both positive and negative with regard to the personality change. Like Donna says - This is the new me.
  4. Hi Jan, I also have trouble finding words. I know what I am thinking about, can see the item but just can't find the word. I know what a bus is but when I was asked to repeat the word bus after seeing a photo of it during a test I just couldn't find the word, I knew it had people in it and transported them but that was it. I have this problem quite a lot but I am trying to work my way around it by describing the thing I can't find the word for. I couldn't remember refrigerator the other day so I just said the cold place where people keep food. My husband eventually got it. That's just one example. Having to deal with new people or new situations causes me severe anxiety as I am afraid of not being able to communicate or make myself understood. Some people are very tolerant and others aren't. I really appreciate it when people go out of their way to try and understand as it does make things easier and I feel less stressed. Like Linnie said, the more upset I get the more difficult things become. It is annoying at times though.
  5. Hi all, here's an update. The case worker was very negative when she first arrived, standoffish and in a bad mood. Talked more about what they couldn't do than about what they could do but my husband kept telling her what I needed, what we needed and what was important to us so that we can have a functioning day to day life. At the end of the conversation they have granted me a 6 month trial period of assistance with various things, we're going to see what I need as I go and see how the team can help me best. In Sweden there are two laws that concern social services and assistance and this assistance I have been granted is under one of the two laws. The other assistance, which is more what I need, transport to medical appointments, someone to accompany me to them and be my assistant is covered under the other law. The case worker told us she would get her colleague that deals with the other type of assistance to contact my husband and then set up a meeting with us. Don't know how fast that will happen as Swedes go on holiday during the summer and a lot of things are shut down or run by a skeleton crew (we have 5 weeks statutory vacation here). So that's where we are now. I don't really feel great about having to ask for help but there is no other way forward right now. Husband is starting a new job and I will be home alone quite a lot of the time and some weeks all week long so I have to be certain things get done and that help is there if I do need it. I received a letter from my neurologist this week and will be seeing him on 31 August to get my sick leave extended, still waiting on an appointment with the specialist memory clinic but things are shut down there too over the summer.
  6. Don't have sleep apnoea. Am just tired. Have masses of vitamin and mineral deficiencies, iron deficiency due to gastric bypass so that plays a role in the tiredness. My doctors are working on getting all that under control but it is going to take some time.
  7. Hi Steve, yes I take anxiety meds and anti-depressants. Just changed to a stronger anxiety medication 3 weeks ago and it helped quite a bit. I have a great mental health team who are supportive and helpful. It's taken a while to find them but they are amazing. Having the right people to give help makes all the difference. :-)
  8. whotheheckamInow

  9. Hi Scouter. Newbie here too. Had my stroke in December 2016. I can relate to the no energy. I hope you have a fantastic time in Hawaii and enjoy your trip.
  10. Amazon or Ebay ;-)
  11. Hi all, So Friday I have a support worker and a person who will be allocated by the municipality as my assistant coming to the house for a first meeting and assessment to see what I need and what they can offer me. I'm really stressing out about it because many of my meetings with medical personnel have not been pleasant experiences or productive. My husband's going to be here but I am having massive anxiety over having to ask for help from someone besides my husband and a few close friends. Hubby got a new job so he will be travelling a lot and I need help attending medical appointments because I can't remember what people tell me, help with transport to and from places and help with some day to day things. Have any of you had to involve outsiders or social services to get help? How did you deal with it? I just feel really frustrated about not being able to handle things on my own anymore. It's a hard pill to swallow. Admitting to myself that I am not that independent person I was before the stroke is rough. I also feel stressed about having to deal with strangers because I have social phobia and severe anxiety. I know things are usually worse in my head than they turn out to be but right now it's tough. Any advice or experiences would be appreciated. Thanks Sandra
  12. Hey all, thanks for the good wishes. Lin, I'm on anxiety meds at the moment. Don't know what I'd do without them at this point. Going to see the nurse in a couple weeks to check on how I'm doing with the anxiety meds and anti-depressants. I feel like I've finally found a level that works for now so I'm happy about that. Tracy, I'm tired all the time. Not like the kind of tired you can sleep off but so tired I sleep 13 hours and wake up tired kind of tired. I'm hoping that gets better over time too. Thanks for all the advice and reassurance. It's good to know that what I feel isn't unique. I just wish we had better resources where I live and more information available. We have a local stroke association and their next meeting is in August. I have it in my calendar so I don't forget to go. :) I'm thankful I found this community and all of you.
  13. I had a gastric bypass 5 years ago. Didn't lose a lot initially for various reasons (PM me if you want to know more) but have currently lost 220 pounds with 55 left to lose. I'll get there when I get there even though I get crap from the doctors here for still being fat. I was originally a size 34 US and can now fit into a size 12/14 top and size 16 bottoms. My mind hasn't caught up with my weight loss. It's a strange process.
  14. I have all medical people or people involved in social services phone my husband because he is better at communicating than I am. He deals with the practical stuff that I can't handle. Sometimes the doctors or social services send us letters instead. I have an easier time with that because I can read it as many times as I need to. I e-mail because I can take my time formulating responses, save drafts and go back to it when I have the energy and then send off the mail. If I have to have a conversation I prefer either FaceTime or face to face because when I see the person's facial expressions and read their lips I find it easier to stay focused (I still have problems maintaining focus this way too). I used to love talking on the phone for hours before my stroke but I'm just not that person anymore. Those who are a part of my life accept that if they want contact they have to do it in a way that suits me. Sometimes if my phone rings I just don't even bother picking it up. It's a stress factor I just don't need to add to my everyday life.
  15. Hi all, been away on vacay for a few days in Malta. Thanks Janelle for the welcome. Deigh, I have a hard time focusing on things for more than a couple minutes so I don't attempt things that require masses of concentration. My husband says that having a conversation with me is like a roulette wheel spinning, sometimes the ball goes in the little hole and then it pops out again and the wheel starts spinning. Makes for good entertainment though because you never know what you get. Asha, thanks for the welcome too. I will try and set a reminder about the chat room. Might be a bit difficult for me to join because of the time difference but thanks again for the invite :-)