Inability to work

[Spoodles]

Hi, I'm new to this site, I have APS, I started with my first clots when I was 23 I am now almost 51. I was symptom free for 8 years until I started mental health nursing 9 years ago, I have had flare ups every two years since which have lasted from 6-18 months. My current absence has been 7 months & I am trying different preventative drugs to help my chronic migrainous syndrome. I'm so fed up that I am thinking about giving up my career as a nurse, has anybody else had the same work problem? If so, how did you get through it without feeling like an utter failure? All replies welcome

[MaryF Administrator]

Hi, it is always a bit tricky adjusting work, I know that from my own path to the present that this is not always easy! Do you have a Hughes Syndrome/APS specialist helping you with your migraines? We have a lot over on the right hand side of the forum under 'pinned posts' also on the charity website here: ghic.world/ A good specialist in addition to making sure your INR is high enough if on Warfarin will also check your vitamin D, B12, Folate, Ferritin and Thyroid, any of these being off can add to chronic migraines. MaryF

[WendyWoo50]

I’m sorry it’s got to this stage for you. I had to give up my job as a Microbiologist for a pharmaceutical company; sadly I had to leave as I wasn’t well enough and 25 years ago it was full time or off sick. No provisions for ongoing conditions.

Three years later I retrained part time at uni as a teacher and using my other qualifications I now run my own business teaching life skills to adults. I do all the prep from my armchair on days when I feel better. I can only work in class a few hours a week I think they call it ‘Therapeutic Work’ but it gives me self esteem and a goal for each day. (In that I need to do some little thing towards a class each day). I have a teaching assistant to do any running around so I just focus on delivering the session.

I love my work, helping people and it keeps me going. Maybe you could help people in a way other than the demands of hands on nursing. Obviously I don’t earn much but I do it for my self esteem. Luckily my husband has a good job.

Good luck. I’d love to hear how you get on. 💋

[Clairey25]

Hi. This sounds so familiar. I resorted to giving up my career as a Headteacher after a number of long periods off work due to micro clots causing vision problems, hemiplegic migraines and liver pain.

Feeling like an utter failure was definitely a good description of how I felt then. My union advised me to ask for an alternative role but at that point I was really not up for a battle and just wanted to concentrate on getting better without feeling guilty about not being at work.

I spent 8 months not working at all and did manage to feel a little better because I attended clinics much quicker when I felt unwell rather than waiting for a day that was a little easier for work. However, I really missed working and decided to look for a part time role that would still enable me to attend clinics multiple times a week but would give me the satisfaction that came from a career.

I have been really lucky and found a role as a teacher for a hospital school, teaching one to one to children with significant health needs that require home schooling or teaching at their hospital bed. I absolutely love it and I was really clear with my employer about my health needs so have lots of flexibility in the hours. I keep the hours manageable so I don’t get too tired and I really understand the needs of the children I teach. Can’t tell you how much better I feel in myself. However, deciding to give up my career was an awful few months and the months without working were also tough but a year later it was definitely the right decision for me, my family and my health.

Giving up your job doesn’t have to be the end. Good luck in your decision making.

[ndstephens49]

Yes, similar problems.

Became ill with clotting at age 39.

At 42 had to retire as Dietitian at local VA hospital.

Nancy in West Virginia